I was talking with my friend Jessica today, who also happens to be my fabulous doula, and she was saying how 'You know it's funny, that you and Kevin aren't like other married people. You actually LIKE each other. You dig each other's company, and you have the same views on the world, etc.' And I laughed and said 'yeah, he's like my other half.' She said, 'this must be really tough for you, with him not feeling well, or being there like you are used to.'

I miss my friend. It feels like part of my heart is missing somehow. So tonight, I'm just going to post a couple of songs with lyrics that share a bit how I feel about Kevin.

Penelope's Song by Loreena McKennitt

Now that the time has come
Soon gone is the day
There upon some distant shore
You'll hear me say

Long as the day in the summer time
Deep as the wine dark sea
I'll keep your heart with mine.
Till you come to me.

There like a bird I'd fly
High through the air
Reaching for the sun's full rays
Only to find you there

And in the night when our dreams are still
Or when the wind flows free
I'll keep your heart with mine
Till you come to me

Now that the time has come
Soon gone is the day
There upon some distant shore
You'll hear me say

Long as the day in the summer time
Deep as the wine dark sea
I'll keep your heart with mine.
Till you come to me
http://youtube.com/watch?v=gW6E2BaEK50

Room's on Fire by Stevie Nicks

Somewhere out in the back of your mind
Comes your real life and the life that you know
It seems like it was the creation of some of those same old things
It seemed to be the only thing left out in the light
She had trusted many
But been unfamiliar with
Almost everyone but you

Well maybe I'm just thinking that the rooms are all on fire
Everytime that you walk in the room
Well there is magic all around you, if I do say so myself
I have known this much longer than I've known you

She had trusted many
And then there would be someone who would enter into her presence
That she could sense for miles
She dreamed of her wanton luxury
And she laughed and she cried and she tried to taunt him
And he hated to be separated
From that picture no

Well maybe I'm just thinking that the rooms are all on fire
Everytime that you walk in the room
Ooh, well there is magic all around you, if I do say so myself
Well I have known this much longer than I've known you

Long nets of white cloud my memory
Long nets of white cloud my memory
Ooh there is magic all around you
Everytime you walk in the room

Well maybe I'm just thinking that the rooms are all on fire
Everytime that you walk in the room
Well there is magic all around you, if I do say so myself
Well I have known this much longer than I've known you
http://youtube.com/watch?v=VwPNhF0dk1U

Talk to you all tomorrow.

Love,
Amanda

TUESDAY, APRIL 29, 2008 11:40 AM, CDT
Today is a good day! He had eaten by the time I got there this morning around 9 AM with the children. He looks really good, and he said he's feeling better =) Dr. Prow said he's on track. His platelet count is up to 29 today, which is wonderful news, considering this weekend is was down to 7.

I have contacted our friend Asa, to help with an 'art' project. I thought this weekend, if I could just bring Spring inside for him, it would perk him up. So on Thursday afternoon, Asa and the children, and Bala and Blackbird, are going to videotape spring =) flowers, trees, the birds singing, the sunshine, and clouds, the blue sky. Then we'll get it onto a DVD, and the nurses can play it on his TV for him.

I forgot to thank the class, that made the get well cards for Kevin this Sunday. James brought them over, and he likes them so much. Thank you dear people.

The other good news is that our medical application for cord blood was approved! That means that the only cost to us is the $150 courier fee! YAY!

More later.
Hugs,
Amanda

TUESDAY, APRIL 29, 2008 07:22 PM, CDT
I printed out the guestbook for Kevin to read this afternoon. I think he was completely overwhelmed by all the caring messages from you wonderful people! He also wanted to see messages from here, and other places as well. It really cheered him up, so thank you all.

They are going to have to rework his PT schedule. When the ladies were working with him this afternoon, his heart rate got really elevated, so they will have to modify it. Also Dr. Prow wanted to run some more blood work. So we'll find out and make sure that everything is running alright. He was fairly worn out this afternoon so we left early, so that he didn't feel like he needed to not rest because we were there.

On the whole it's been a pretty good day. Slowly moving forward.

Each day will get better.
Hugs and Love to you all,
Amanda

WEDNESDAY, APRIL 30, 2008 04:58 AM, CDT
Last night I got a call from Mick, his nurse. Around 9 PM, they had to move him back down to the ICU because his heart got tachy. They have started giving him the IV version of his heart medication. It is very fast acting, but doesn't last long. They also put him back on the other heart medication. Dr. Christensen will see him this morning, along with Dr. Prow.

At 10:30ish, he told me, 'go home, and get some sleep.' So I did, and well I'm up now.

More later.
Keep us close today please.

Love,
Amanda

WEDNESDAY, APRIL 30, 2008 07:35 PM, CDT
The heart issue is due to a combination of dehydration, because of excessive bowel movement, and the PT they were doing. He's stabliized today. They have him on the two meds now, and his heart rate was higher than they would like, but is now steady. They want to observe him to make sure its' going to stay that way for a couple of days down in the ICU, so they don't have to move him around unless he's ready to go to the 5th floor again. Today he ate, and drank, and did several sessions of PT. He is tired, understandably. But is determined to get home.

He also has a fungal infection in his bowel movements. They are starting him on medication for that. They have instituted a policy of complete covering from head to toe for those who enter his room, including myself and the children. At this moment, I feel it's best for me to wait to visit until he's had a few days on this med.

Both Dr. Christensen, cardiologist, and Dr. Prow, feel this is a small kink. They don't see this as a major issue. Dr. Prow said his labs continue to look great, and improve everyday. Dr. Christensen looked at his echocardiogram today, and said he saw nothing of concern there. Dr. Prow said that she does not see this happening every time he has a chemo treatment either. Since he was so sick when they started, she expected that we'd have a few glitches to get him feeling better. She told me that most people are on an outpatient basis with this type of chemo. And she sees Kevin doing that as well, once he gets stronger.

On other news, We are definately having a GIRL! Tegan is healthy, and just right. Plenty of fluid in the sac, and heart tones good, and I have a few blurry pictures with labels to prove it too =)

I want to thank those of you who helped out with the children last night and today. I am so grateful that I can let them be with people who care about them when these things come up. It takes a load off of my worry. They've had a really full, and fabulous day!

Other than that, remember to hug those you love, and tell them too.

Take care of yourselves, and I'll talk to you tomorrow.
Lovies and Huggies,
Amanda

Kevin got moved out of ICU last night around 10 PM. It was quite a shock to me today when I went to see him in the ICU and there was an older gentleman laying in his bed! He's back on the 5th floor again.

He's done several rounds of PT today, and is now eating at least 2 meals a day. He looks very good. Much better, and his color is back in his face. He told me that Dr. Prow is happy with his progress, and also that things are going well.

I am off to bed.

Good night.
Amanda

Halo Amanda

Reading along hear with You
And
Wishing
Hoping
and Praying for You
and Kevin.

Just have Faith.
we will send You the Strength...

Chahlie

Thank you all for your caring words

SATURDAY, MAY 03, 2008 06:35 AM, CDT
Last night I went and spent a couple of hours with Kevin. Those gowns are a beautiful sunshine yellow! I look like a giant ball of happiness ROFL

It was really nice. I spent some time grooming his hands and feet, and giving him a wipedown on his face and neck. He said he felt so much better when I was done.

We talked about what we have been thinking about lately, and mine consisted mostly of what my life means to me, and how I act and speak to others, and how what I do truly affects others. Do I want that to be a positive meaningful experience, or something other than that? I want people to look back on interactions with me in a positive way. Like I've made a difference in their life, or brightened their day.

I learned yesterday that I did just such a thing for someone. I had no idea that what I had done made such a difference in her life, until she said so. What if I hadnt' done that thing? I was humbled by that revelation that she made. It made me realize that you never know how your actions or words will ripple outwards. So you should make them kind and loving ones. It also made me think of the quote by Ghandi - 'You must be the change you wish to see in the world.' Or even 'physician, heal thyself.'

Kevin is so determined to get home. He was talking about his plan for PT in order to be able to be strong enough again. He spent a lot of time talking about what kinds of things he wants to do with me, and the children when he gets better.

I asked Kevin if he knew the poem by e e cummings, 'i carry your heart.' He said no. I told him it was true, so I quoted a bit for him, and I am putting it in here, for those of you who may not remember the whole thing:


i carry your heart with me

i carry your heart with me
(i carry it in my heart)
i am never without it
(anywhere i go you go,my dear;
and whatever is done by only me is your doing, my darling)
i fear no fate
(for you are my fate, my sweet)
i want no world
(for beautiful you are my world, my true)
and it's you are whatever a moon has always meant
and whatever a sun will always sing is you

here is the deepest secret nobody knows
(here is the root of the root and the bud of the bud
and the sky of the sky of a tree called life;
which grows higher than the soul can hope or mind can hide)
and this is the wonder that's keeping the stars apart

i carry your heart
(i carry it in my heart)

ee cummings

I am going to be completely lazy this weekend. The children went away to Grandma's and Grandpa's house.

Talk to you all again tomorrow.

Love,
Amanda

I think Kevin has turned a page in his book of life. He said to me yesterday, 'you know they seem (doctors) to think I should stand up just to be standing. I am thinking about returning to health. I have to think about the long term, and be healthy and whole. I don't mind having the chemo and the other things that are keeping me alive. But this is my body and my life. I am not eating junk anymore. I'm going vegetarian again. I'm the one who has to have the infrastructure ready in order to walk. I need to look at the long term goal, and take it slow and easy.'

There was this steel core in him that I haven't seen for a while. This is very good. He must be ready again.

As far as I can tell, it's the two oncologists who have been on call during the weekends that are having the hissy fits about him not being out of bed yet. Good thing they're not in charge the whole time...The one that's on duty this weekend, arbitrarily changed his PT, and added some medication willy nilly. This guy's attitude is 'I'm the doctor, I know what's best.' Like he's some parent. This is also the Dr. who gave Kevin the antibiotic 'just in case' which caused this fungal infection. That was during the blood clots hospitalization. That was one of the side effects of this medication.

Dr. Prow agreed with him about the PT when I asked, and the cardiologist told him that in a few more days they'd talk about getting him up more. He wants to be sure that his heart is healthy and well. Also it's good if he has the strength to walk first before attempting to do it. Kinda like the reason babies don't walk right away when they're born. There's a few goals to get to before walking.

It's a beautiful day out today!

Talk to you all tomorrow.
Hugs,
Amanda

Amanda,

I'm glad to hear that things are coming along so well with Kevin and that his inner strength and reslove to heal and return to health has kicked in.

I too have been following along and sending prayers, love and strength your way.

I popped on here today to share a syncronicity with you on your Ghandi phrase. First off I have a poster of that hanging in my downstairs bathroom, and it was used on the show 'Gray's Anatomy' this past Thursday with a nice outcome.

Kel - Nice outcomes are the happiest.


Good Morning!

Kevin continues to work on his PT. Yesterday, he sat up on the edge of the bed in the morning for about 30 sec. before he had to lay back down. Yesterday afternoon, he sat for about 5 minutes =) He said he feels much stronger everyday. He's refined his PT that he does on his own, and they gave him a large rubber band type thing that he does arm exercises with. I took the kids into see him when they got back, and he really lit up when he got to talk to them.

Dr. Prow said yesterday, that if the bowel infections aren't gone when I go into labor, that Kevin isn't allowed at the birth, and also she said that I shouldn't bring Tegan up to see him either. This was very hard to hear. In short what this means, is that I won't see Kevin for about 8 weeks until Tegan gets the hang of nursing. Having had both children who got nipple confusion, and children who didn't have nipple confusion, I prefer those without nipple confusion, as it makes the nursing so much more enjoyable. Though yesterday one of his labs, did come back negative. So it's one down and one to go.

Kevin is eating more at each meal now. This is great! I think the want to come home and take back his life, is such a good motivator for him.

Thursday we will try the 'bring spring inside' art project again. The kids are pretty excited.

I don't know much else right now.

If there is anyone I've forgotten to thank for anything, whether it's a card sent, or a favor - Thank you very much for the kindness. Having people support us really helps me stay strong and to cope with this difficult situation we've been placed in. It's as I said to a friend online, I'm scared every day and if I could wish this away, I would. In a heartbeat. This is the card I got dealt, and so I have to play this out until the end. Whatever that means.

I hope you all have a wonderful day. Find a moment to get outside if you can, it's looking fabulous out there already!

Hugs and Love,
Amanda

Dear Amamda,
I have followed your and Kevins journey on all the forums. I have not contributed a word.

Each time I read your posts, my Heart swells to a painful throb of joy or sadness and words escape me completely. Your trials and tribulations are great and your strength and love so powerful. A power so great it can be felt to the core and renders me speechless.

Instead of speaking, I instantly stop and send a Prayer of Peace, Joy and Healing to your lovely family.

From our mouths and hearts to Gods ear.

God Bless you and yours.

love,juni

That was beautiful Juni. Thank you for caring, and also for sharing that sentiment with me. May the blessings be returned to you and yours.

Love,
Amanda

Yesterday I found out that the quarantine may last as long as Kevin is in the hospital, meaning a couple of months. This is frustrating to me, to say the least. The ramifications to our family make me want to cry. It's like looking at a Monet painting without blue...

I just have to hope that it will get cleared up soon, and that way the children can at least see him. It would be nice for Kevin to be able to attend the birth of his newest daughter as well.

I met my OB yesterday, and I am highly impressed, and greatly relieved as well. She's very open to my thoughts on how birth should be a sacred and spiritual time, and that since I have had successful vaginal births, there's no reason to go off the deep end and assume that tragedy will strike, it's only a matter of time. She understood that I don't want to be tied up and strapped down to things, I want to be able to move during labor, in order to use that crazy force called gravity to help birth Tegan.

Talk to you all later.
Hugs,
Amanda

We were talking about the quarantine, and Kevin says to me, 'A day without you is like a day without sunshine.' *sigh* I wish I could give him a big kiss. It will be so nice when he comes home.

Yesterday he sat up on the side of the bed doing PT for 25 minutes! Yay! And in the afternoon he stood upright! Huzzah!!

Dr. Prow says he may be able to be released in 3 weeks =) Just in time for me to go to the hospital LOL Timing is everything right? Some of the nurses were talking with me before I left, and one of them said he may end up in skilled care before he comes home. Which is understandable I suppose.

On the whole a very good day yesterday.

I've noticed my updates are getting shorter as the days go by, and I take that as a very good sign that we are on the right track to health and wholeness.

For those of you who've asked, my due date is May 29th. Though one of the nurses joked with me, that it would be good if she came late a week, just to give Kevin an extra week of recovery. =) I don't know about that, since I'm carrying her around here...Those of you who've been at 37 weeks pregnant know exactly what I mean!

Today is the art project day, I'll let you all know how it turns out.

Have a beautiful day!

Love,
Amanda

Hi Amanda,

I am visualizing Kevin released from the hospital and fully recovered to see his daughter born on the 29th. The progress he's been making so far is wonderful and so amazing. Healing light and prayers continue for you and yours. Keep the faith!

Today Kevin told me that the chemo treatment was pretty tough yesterday. He said the fatigue hit him almost immediately. He had the staff shave his head, just to get it over with, since it's inevitable that it will fall out. Luckily he has a lovely shaped head, and looks good bald too. They've started putting him on this machine, that gets him upright, without him having to expend the energy to do it, until he gets stronger. Apparently when you spend so much time in bed, when you do start to get back out of bed, your blood pressure drops and you almost faint. I thought it looked like some modern torture rack...I asked him if he'd been misbehaving when I came in today. He is in pretty good spirits. We talked about looking forward to his coming home.

The spring taping went really well, and I think we'll do a couple more here as well. The kids had a great time playing with Uncle Asa =) It was certainly a beautiful day for it!

Today the boys had the final class of their homeschool enrichment class, and they had a picnic at the park! O joyous day at the park in the fine weather, with multiple aged children!!! LOL They SAID they ate some lunch...but there seems to be quite a bit left over here.


Talk to you later.
Hugs,
Amanda

Yesterday afternoon, I'd decided enough was enough with the quarantine. After having to shoo the children out of the lounge while someone was watching Walker, Texas Ranger and they were watching people get shot and killed with guns, that was it. I spoke with the nurse, and explained that this was ruining whatever semblance of family life we'd had left. She told me this is a 'suggested hospital policy' in order to reduce the contamination between patients. Since we aren't handling feces, and then hanging out with other patients, I asked if there was any point in having this restriction on our family. She told me that she and the rest of the staff felt it was important for Kevin to get to see the children, and they didn't see any problems. In addition, I found out that he had this one infection for at least a month before he went in. So it's not like we'd been isolated there. We put into place a few ground rules for the children, such as washing hands with hot water and antimicrobial soap before leaving the room, and after touching Dad. They also must use the public bathroom on the floor and not the one in his room since that's where they empty his bedpan. Also that we must keep our shoes on while in the room. She said that was the original reason they gave us the suite to begin with, so that we could have family time together. The staff is awesome! We actually got to eat dinner together last night, for the first time in almost a month. I could feel Kevin when I held his hand, and he mine. He kept saying 'This is nice.' and smiling at me. Today at least 3 nurses commented on how much better he looked today than yesterday. The power of love and family are amazing. I thought he looked better too. He seemed in a great higher spirits, and that counts for a great deal.

Several of the nurses have told me how nice it would be, if I gave birth while I was up on the 5th floor. LOL Guess they like a change of pace too. They said since the lab people are the ones to collect the cord blood, they could just come up there instead. They also commented on how they too have warm blankets. I think we've been adopted.

Today was a really wonderful day. =)

I hope you each had the same.
Talk to you tomorrow.
Lovies, and Huggies,
Amanda

Today we had breakfast at the hospital for Mother's Day =) A nice surprise for Dad.

We took a small break from the hospital to attend UU, and I was glad we did. It was a great service, and I would have been sorry to miss the bridging ceremony.

This afternoon we watched a food network show, about cakes, which was of particular interest to Morgen, as they were making the cake for the Harry Potter premiere!

Then we all listened, well I napped on the couch, and Morgen read Chapter 5 of the first Harry Potter book to the boys out loud. After she was done, they wandered off to talk to the nurses. Kevin mentioned that he really enjoyed hearing the reading. He said it was much better than watching TV all the time. So I proceeded to read Chapter 6. He sat there with a big smile on his face the whole time.

He told me that this is really tough for him, the chemo. It hits him hard, and he is weak. I told him, to make sure to ask for nausea medication, that's why they have it available. I reminded him that no one expects him to be a super hero about this.

After we ate dinner, Ewen decided he wanted to read aloud to Dad too, so he read a few pages. He has really come a long way this year with his reading. I was so pleased, as the boys don't often read aloud. He was so happy to get to help Dad too, I could tell.

Since Dr. Prow shows up so early in the mornings for rounds, Kevin is going to be the one to talk to her about being present for the birth. Even being there, behind glass or something would be better than missing it. I think he'd be so depressed if he didn't get to see Tegan arrive. If she still is not wanting this, then I just guess I won't be able to 'make it' down to the 4th floor...Oh well. I trust that the Universe will provide the experience our family needs. This isn't something that happens everyday, and especially with the circumstances, I think it would be highly detrimental to Kevin's spirits to miss this.

I hope you all had a lovely Mother's Day, whether you are a Mommy, or have one ;-)

Talk to you tomorrow.
Love,
Amanda

Today Kevin was up to almost 50 degrees on the tilt table, getting upright =) and they were planning on getting him in a chair this afternoon too! He spoke with the oncologist that's on call today and tomorrow, and talked about how much he wants to be at the birth, and the doctor said if it was up to him, he'd be there. This doctor also told me to keep talking to Dr. Prow about it. It's not like we're having a toenail removed here, this is our baby. It just won't be the same if he's not there, it's not that I can't do it by myself, but something vital would be missing.

This afternoon, Morgen managed to fracture her right ulna. What is it with our family and broken bones in May?!? It's very tiny, and only requires a sling. So it could have turned out a lot worse. I'm just sorry it happened. She's pretty bummed about it, and hopes it won't have to be on long. We are supposed to see the orthopedic doctor sometime this week, and funnily enough, it's the same one we saw with Bowie's first broken arm.

Other than that, not much else LOL happened today.

I am tired, and thinking about going to bed.
Hugs,
Amanda

Kevin and I used to dance together to this song, thanks to Herb Alpert... http://www.youtube.com/watch?v=oqmhXmTsCPw

You see this guy,
This guy's in love with you
Yes I'm in love,
I love you the way I do
When you smile I can tell
We know each other very well,
How can I show you?
I plan, I got to know you cos

I heard some talk,
They say you think I'm fine
Yes, I'm in love,
And what I do to make you mine

Tell me now, is it so,
Don't let me be the last to know

My hands are shaking,
Don't let my heart keep breaking cos
I need your love, I want your love
Say you're in love, in love, with this guy
If not I'll just die

Tell me now, is it so,
Don't let me be the last to know,

My hands are shaking,
Don't let my heart keep breaking cos
I need your love, I want your love
Say you're in love, in love, with this guy
If not I'll just die

~~~~~~
We sat this evening before the children and I left, and cried together, wondering if life will ever have anything of what used to be normal again. Kevin told me that when he dreams, he dreams about things we used to do, like taking the children to the park, and walking around town, and making muffins, gardening, and cooking, and well normalcy.

Anyhow, I'm going to bed.

Talk to you all tomorrow.

Amanda

There are times that I can't even remember what life used to be like, before all this happened. When I think about life a year ago and what I was doing at that point in time, it seems so surreal to me. As if it's something from a dream, that I used to have.

Morgen had a good checkup. Dr. said that she will only have to be in the sling for a week, and then we'll start moving it around. That is very good news. Hopefully, it will be a straightforward heal.

I had a good appointment as well. Tegan (Yes, Fran, Teagan is a possibility!) is presenting nicely, and is where she should be.

Kevin got blood today, because his red blood cell count was low, so we must be at the low point. Yesterday, or the day before I told them he was starting to feel physically down, and also his nose turned bright red again, which is what happened last time. So they said they'd keep a real close eye on him.

Dr. Prow told me today, that everything has been set up for Kevin to be at the birth. Yay! His nurse said, that we both looked so much happier and better after that bit of news. I have to say I am very relieved, and so is Kevin. I just couldn't do it without him being there.

Now if we can manage a pair of eyewear, so that he has clarity, that will be the next thing off of our list.

A pretty good day today.

Goodnight, and sweet dreams!

Love,
Amanda

Amanda

{{{*}}}

god bless you both.
It must be so surreal, as you said.
My heart and prayers
continue to go out to you.
It's wonderful to hear
that Kevin will be there
for Tegan's birth.


That song is so very sweet.

Things is lookin' up! Keep on hanging in there, Amanda. You're doing great.

Maria

Chahlie

Time for another quick update.

Yesterday when I arrived to see Kevin, guess who I found sitting up in a chair? =) He said he was feeling pretty good. He told me he'd like to be home by Saturday/Sunday. His PT lady said she's going to need a much larger whip, and a lot more 'yes m'am' from him. Dr. Prow would like him out of the hospital by then as well. There's discussion about putting him in skilled care before he comes back home. There is a wing at the hospital, and also his nurse told me there are facilities here in Ames that could also be used. He has another round of chemo tomorrow. Kevin had some energy work done this week, and he said it was really helpful. Our acupuncturists told me that with the chemo, he needs to have his Chi built up regularly to help him stay strong, and since it can't be done that way for now, we'll do it another way.

Teagan continues to be a joy, and it feels like she's been here forever. Morgen, Ewen, and Bowie love her so much, and want to hold her often.

Take care.
Amanda