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Showing posts from August, 2010
Sometimes I think of these really poetic things to say and then when I get on the computer it all drains away... and I'm just left with well, nothing.

Breakfast with Grandma and then to the hospital. Another day...

Peter Joel.

Some of you know what the baby's name is. Some of you don't. His name is Peter Joel. Mike and I named him shortly after our ultrasound appointment. We just knew it was his name.

We were waiting to make it public til he was born but I figure, "What the heck?" I mean there's other important stuff going on right now. So, well, it's secondary.

I can't wait to meet Peter but am looking forward to a full-term pregnancy. That's my prayer. I don't know how we'll handle a newborn on top of all of this but our God is full of grace and mercy and will sustain us. But I'm planning on being loopy, exhausted and emotional.

So talking with a few people lately and they asked me what they can do and I told them this.... "I want a Big-A-- Baby Shower!" Excuse me for being fresh. What I really want is to be around people who love me and are praying. I don't care about presents. I just want to eat cake and pray for Peter... and celebrate LIFE. Cele…

When All is Stripped Away..

What do you cling to when all is stripped away? What do you hold to when your nightmare has come and you find that you're not dreaming? What do you say when you know with every word you speak that your heart might break and the pieces might never come back together?

"The Lord gives and the Lord takes away. Blessed be His name."

Oh how I long for my heart to respond like Job's. How I long to cling to the truth that our God is good, near, ever faithful, ever strong, all knowing, all-powerful.

My heart might be breaking but this I do know... that NO MATTER what happens our God is God. He is good whether or not what I want to have happen happens. His being Good is not dependent on my life going the way I want. Do I want Samuel to be healed? OF COURSE! Do I wish this hadn't happened? Of course!

But I am trusting Him that He knows the bigger picture, that He will receive the glory, and that He will NEVER leave or forsake me!

John 9:1-7 says,

9:1 As he passed by, he saw a ma…

what a difference a day makes...

If you had asked me a week ago would I imagine that Samuel had cancer I would have looked at you wondering what planet you came from... and here we are... with this crazy scary diagnosis/prognosis.

I had an OB appointment today and all looks well with baby and my fluids look normal! Hurray.

It's hard to try to rest, take it easy and care for myself in the midst of all that's going on. I know it serves everyone and especially the baby but it's not natural to not stay near Samuel while he's in the hospital.

I can see that Mike is exhausted and it's causing a strain on him.

The prospect of being her for a lot longer (6 weeks) seems so overhwelming... but if I look at the year it's terrifying. So one day at a time. Sometimes it's just one deep breath at a time.

Someone brought Samuel a really cool tiger hat. He put it on and roared so I roared back... so he told me, "No Mama. I'm the tiger. You're the Mama!" It gave me a good laugh.

His favorite t…

Fundraiser for Samuel.

Help Us Whip Cancer Pampered Chef Party
Proceeds Go to Samuel Napier Fund {20% of purchases (before tax and s&h)}
Please make online order purchase by August 31, 2010

1.) Go to: www.pamperedchef.biz/jennifernapier
2.) Click on Shop Online.
3.) Click on Invited to a show and would like to place an order.
4.) Host First Name Type: Samuel
Host Last Name type: Napier
5.) From Hosts Listed Below click on Samuel Napier
6.) Shop!

*If you’re local feel free to ship to host. If you live away please pay for direct shipping and handling!*

A new toy.

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Samuel was given a new toy! LeapFrog Leapster Explorer Learning Game System. He is requesting new games. (He has the Madagascar Penguin game).vDon't know if you have any we can borrow or know how to purchase them inexpensively.

Hyundai (auto company) just donated a ton of money to Children's Research. They had a big party and passed these out to inpatient/outpatient children.

Samuel LOVEs his. It's a great distraction when he's not feeling well.

Hats.

To all you knitters out there. I thought of something you might enjoy doing. Would you be interested in knitting a hat for Samuel? He'll probably lose all his hair in the next 3 weeks. Just thought it might be something practical. Knit your prayers into it... make a covering for his head :)

How to encourage.

Hey friends,

Would you mind commenting after my posts? It really encourages my heart to hear feedback from you all. Even if it's just a sentence. Please?

JLN

Coordinating Help.

Just update the caring bridge site again. Feel free to follow at www.caringbridge.org/visit/samuelnapier

Here's an important clip from my most recent journal post.

"We have a help administrator. her name is Lori Beeson and she's a dear, dear friend. If you would like to offer help you can reach her by e-mail* at Lbeeson@mail.com

Now, let me tell you if you do offer you better mean it because she WILL put you to work :)

We need help with child care, meals, cleaning, picking up groceries, running errands, lawn care, etc. Laundry, Dishes, home managment. Taking kids to therapy appointments, etc. Picking up kids from the bus stop at the end of the driveway (starting September 7th).

*Also, please note: IF YOU SEND LORI AN E-MAIL BE SURE TO PUT SAMUEL IN SUBJECT HEADING OTHERWISE SHE MIGHT THINK ITS JUNK MAIL NOT KNOWING WHO YOU ARE!!!!*"

Big Gulp.

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Okay all of you people who keep "yelling" at me and telling me to get off my feet, and putting me in a wheel chair and harping on me to drink MORE water.... here's the proof. Look at my new water bottle. Yes, I'm drinking water. I will try and take it easy....

But just so it's said, it's a lot easier said than done!

After the OR

I'm eating popcorn and drinking a juice box and am about to go to bed.

I must confess I'm glad the procedures are over but there's a new type of nervousness in the center of my gut... what will they say tomorrow? Will the bone marrow be normal? What type of treatment will he have? How long will he be in the hospital? The list goes on and on.

But you know what's comforting? God already knows the answer to all these questions. And He's not afraid. He knew Samuel had this before we did.

We've been so blessed with love and support... with meals and coffee and gift cards and hugs and tears and to you anonymous people who have given money... thank you! And to those who have treated me to breakfast, and lunch and dinner... thank you! And for those of you who have brought gifts for Samuel and Libby- thank you.

I'm realizing I have to be careful not to leave Libby out. She's very aware and sensitive and discerning and all she sees is Samuel is in pain and he's g…

Caring Bridge.

We started a site to help keep people posted and up to date with what's going on. You can follow at:

www.caringbridge.org/visit/samuelnapier

Just started it last night so it will take us a moment to get used to using it! But that's the plan. I will post personal posts on my blog and medical updates on caring bridge.

Monday update.

Sitting and waiting for Samuel to return from his bone scan.

They will be able to do the biopsy of the tumor tomorrow. They will also be putting in a central line (also called a CVL) this will eliminate the need for IV changes and make it easier to draw blood as well as administer fluids, etc. It looks kind of weird and crazy.

They will drain some fluid from his lungs (I believe on the left side). He will also get a bone marrow draw from the back of his hips (near the spine).

We talked with Dr. Lowe today (our oncologist). The plan is for chemotherapy to start probably this Thursday.

We continue to covet your prayers.

A song that encouraged my heart.

Mike was listening to our friends' ipod. There's a song by Sufjan Stevens called Vito's Ordination Song. I listened to in the afternoon and had a great cry. It's a must listen to kind of song. Below are the lyrics. It's really beautiful.


I always knew you
in your mothers arms
i have called your name
i have an idea
placed in your mind
to be a better man
ive made a crown for you
put it in your room
and when the bride groom comes
there will be noise
there will be glad
and a perfect bed
and when you write a poem
i know the words
i know the sounds
before you write it down
only wear your clothes
i wear them too
i wear your shoes
and your jacket too
i always knew you
in your mothers arms
i have called you son
ive made amends
between father and son
or if you havent one
rest in my arms
sleep in my bed
there is a design
to what i did and said

Jesus Paid it All.

My head has been stuck on repeat... "Jesus Paid it All". I started singing it to Samuel on Friday while he was getting an ultrasound. Hymns calm him down so much. Who doesn't love this hymn?

I hear the Savior say,
“Thy strength indeed is small;
Child of weakness, watch and pray,
Find in Me thine all in all.”

Jesus paid it all,
All to Him I owe;
Sin had left a crimson stain
He washed it white as snow


Lord now indeed I find
Thy power and Thine alone
Can change the lepers spots
And melt the heart of stone


Jesus paid it all
All to Him I owe;
My sin had left this crimson stain
He washed it white as snow


It’s washed away
All my sin
And all my shame


And when before the throne
I stand in Him complete,
"Jesus died my soul to save,"
My lips shall still repeat


Jesus paid it all,
All to Him I owe;
Sin had left a crimson stain,
He washed it white as snow.


Sin had left a crimson stain
He washed it white as snow


O praise the One who paid my debt
And raised this life up from the dead


We’ll praise the One who…

MRI.

Today was supposed to be a day of a lot of tests. Then they said, no, they were mistaken, it's set for tomorrow a.m.

Well, Samuel's just been put (N.P.O.-nothing by mouth, food or drink) because... drumroll please... they're trying to make it happen today :)

We just need an anasthesiologist and we'd be set. Tomorrow they're completely booked all day so here's hoping we can get this MRI done today. They'll be looking specifically at his lungs.

They will do a bone scan probably tomorrow.

Then either Tuesday or Wednesday they will do a biopsy as well as a bone marrow draw... while he's under, Thank God!!!!

He was pulled in a wagon and taken to the toy room and got to play for an hour from his wagon.

He's gotten a bunch of toys.

A special thanks to Jessica S. and family for all the spiderman gear... that boy is hooked up! We were given water, applesauce, booklight, coloring books and crayons, a Veggie Tale DVD toys, toys, toys, and balloons. It's like Chri…

How U can help.

In case you're wringing your hands and wondering, "What can I do? What can I do? I'd like to help." Here are some suggestions.

***** PRAY *************

-Send a card. (please ask for address. I don't want to post it here.)
- Send a text.(please ask for numbers. I don't want to post it here.)
-Our finances are probably going to be blown to smithereens. Gift Cards: Gas cards, Starbucks cards, Target cards... even if it was $5 will help. We will be paying for a lot of extras and I have no idea how Mike is going to work in the midst of all of this.
-Help with the kids. We are still trying to figure out how to care for Samuel and our other children. We will need help.
-Meals. Brought to the hospital and/or the house.
-Help us find a vehicle. We have been at the mercy of others borrowing vehicles... we need a vehicle that can hold our growing family and also for the needs of traveling to/from the hospital.
-With-holding cliche comments. Please. We know God is good and He l…

When Faced With Another Day.

Dawn is creeping past me. The fog is over the pond. The sky is painted with pale pinks and other supposed calming colors.

I came home last night my head reeling. And although I was so exhausted I thought my brain was numb I had a hard time falling asleep. It was after midnight. I dreamt weird dreams and then one thought came into my head to disrupt my sleep: Samuel.

So it's all true. It's not just a bad dream. I had to walk past the floor on which he had been sleeping this past week. He wasn't there.

I feel sunk. Gasping for air that's not there. My stomach in so many knots it would take a professional sailor to undo them. I've been on the verge of throwing up since yesterday.

I've been wandering the rooms like a mental case wringing my hands and trying to avoid losing it completely.

Damn this sun. What is it trying to tell me? That it's a NEW day? That everything is going to be all right? And what if it's not all right? What if my world is slowly falling a…

Want to help?

Things that would be helpful and appreciated for Mike and Jennifer:

- a good (not crappy) book-light for Mike

- bottled water

- crossword or sodoku puzzles



Things that would be helpful and appreciated for Samuel:

- spiderman anything

- Mylar balloons

- coloring book and markers/crayons

- stickers

- childrens movies to borrow

- mott's applesauce cups

- children's worship music or instrumental music

Samuel

Michelle Swingle here, logging in on behalf of Jennifer. She composed the letter below and asked me to post it for you...


Dear Friends,

Once again we are in need of prayer. Surprise surprise. :) I took Samuel to the doctors at 7:30 this morning. (Samuel has continued to be in pain since Monday.)

After our doctor did a rectal exam he detected something was very wrong and sent us to CHKD ER.

After a normal ultrasound test and abdominal x-ray all that was left was a CT scan. It revealed an enlarged bladder. The reason for this was a baseball to softball sized mass. It blocked his bladder from urinating as well as made him become constipated. It's also causing his pain.

He has a catheter and IV now as well as enjoying the effects of morphine.

We have seen an oncologist and have spoken several times at length. Samuel is now a patient on the oncology floor under the care of Dr. Lowe.

We will be here all week-end into next week (at a minimum) running more tests, bone scan, MRI, etc. A biop…
Days are kind of weird and crazy and long and strange. I don't know which way is up half the time. Samuel's still in pain but not quite like the pain he was in. I'm exhausted but that's a perpetual feeling so nothing new there.

Listened to my voice messages tonight. Just got a reminder call that Michael has a doctor's appt. tomorrow at 8:15 in Norfolk. So that's changed my whole P.O.A. for tomorrow. (Plan of Action) I'm tired just thinking about it.

I'm supposed to see my surgeon for follow-up tomorrow afternoon. I'm going to see if they can switch me to the a.m. because otherwise I will need to cancel. I can't take all four kids with me. I can't get them in and out of their carseats. For that matter I shouldn't be taking Michael tomorrow because of the whole no lifting thing... but what to do :)

So, blah, blah, blah.

On verge of tears. Tomorrow is going to be another day. I'll probably feel better than... right?

A trip to CHKD.

Samuel had to go to the ER at CHKD yesterday. It was a long visit. He ended up having an x-ray done which revealed that his entire intestinal tract was backed up. I've never known anyone to be so badly constipated. Last night he screamed all night and was up every 10-20 minutes. He was miserable.

I took him to the doctors at 7:30 this morning and guess what... he has a urinary tract infection to top it off. So now he has antibiotics and pediatric suppositories, mirulax, lactulose, ibuprofen for the pain, benefiber, etc. He's hooked up. We're just waiting for him to be able to push this stuff out and feel better.

I didn't sleep last night and I drove today. I'm wiped out :)

SOS

Hey Friends,

I'm in need of help. I'm looking for people who can come over and help me take care of the kids. I'm supposed to be on bed-rest and I have that whole restriction of not being able to lift more than 10 pounds. Mike needs to work... for obvious reasons :)

If you're able to help even if it's for part of a day. Could you let me know?

Love,

Jennifer
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Bagel Breakfasts.

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So, I tried to fall back asleep but an hour and a half ago I was awakened. Maybe it was all the trips to the bathroom in the night or maybe it was Samuel's blows to my head. I don't know if it was his elbows, hands, or feet but he kept getting me in the head. All that to say is I'm up with the dawn.

Once I was awakened all sorts of thoughts started going on and I just couldn't fall back asleep.

Thoughts of school starting again. Libby will be in kindergarten this year. Samuel will return to pre-school and Michael will probably be joining him. I know what you're thinking... "michael is only 2!" I know. But he needs a lot of language enrichment in addition to physical and occupational therapy which our school provides. This means 3 out of my 4 will be at the same school.

Poor Ian. He's probably going to wonder where everyone went. Thankfully it's only half days.

I'm eating my multi-grain bagel with turkey and cheese, my morning staple. It's …

Being weird.

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When you're on pain meds and you look and feel like crap it's amazing how weird you get.

I have all these plans, like I'm sure any other mom on the planet does, that if I were to get a chance to rest then... I would read this, watch that, take naps, etc.

But the truth is when you feel lousy you don't care. You don't do anything productive. You don't feel restful. You just feel strange... and then you find yourself taking strange pictures of yourself on photo booth.

At home.

Hey guys, it's me Jennifer. I got home last night after 7. I couldn't wait to see the kids. They were so excited to see me.

Yesterday was a long day of attempting to recover and rest. I threw up a lot (everything) once yesterday but am doing better now. Pain is under control and I LOVE being in the comfort of my own bed. My mom thinks I've lost some weight.

Surgery went very well and I was thankful the competent group of doctors and nurses I had working on my behalf. I know it must have been the Holy Spirit giving me peace yesterday before surgery. It all happened so fast but I knew God was with me. When I came out of surgery on Wednesday the first thing I remembered saying was that I was in pain and then I threw up. The pain was horrible the first night and it was made worst by having to do a non-stress test on baby boy. They strapped me down with two belts and when you've just had surgery on your tummy... well, I think you can imagine the pain... not fun :) But good t…

Our Love/Hate Affair With Hospitals

This is Mike guest-posting to give an update that seems nearly commonplace for this family. Do we ever not need prayer from the People of God to the God of all comfort? Does any saint not need prayer? I'm thankful that Christ intercedes for us at the Father's right hand.

Here's our latest felt need: Jennifer, when readying herself and the children for an excursion of appointments, began feeling sharp ("stabbing" is the nurse's preferred term) abdominal pain at about 7:30 this morning. So, I skipped work and Jenn skipped the dentist, the kids went to their appointed child care/play date for the morning (thanks friends!).

Jennifer and I drove to the hospital to get her and the little one in-utero checked out and to hopefully cut the pain. Jennifer was in real agony - yet it wasn't labor. The baby was and is fine, no problems.

However, Jennifer needed an emergency surgery to take care of a hernia that has grown increasingly troublesome and seems to have cause…

Bunny Foo Foo.

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My Dad found this precious baby bunny. Actually Allie, our dog, found it and brought it to my Dad. Isn't it cute? The kids got to pet it and went crazy over this sweet little animal.

We returned it to its home a little while later. But it was fun while it lasted.

With Flair.

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I had the pleasure of having my Grandmother and Auntie Barb from Texas with us for a couple of weeks. One of the many highlights was getting to go to our favorite teahouse "With Flair". It's a wonderful tea room with beautiful decor, delicious food, and a WONDERFUL staff.

They went above and beyond giving Libby a special "children's tea" even though it wasn't afternoon. She had a cheese sandwich in the shape of a flower, a PB&J sandwich shaped like a bear and a teapot cookie with fresh fruit. She was given her own pot of strawberry tea.

They even took her upstairs and got her dolled up in hats, pearls, and a feather boa to top it off. What a treat!

Prima Ballerina.

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It was so fun to see Libby perform this past June. The theme was Vivaldi's Four Seasons. Samuel, Ian and Michael did great watching the whole performance. They were entranced watching the dancers on the stage. What a great time we had.

24 weeks.

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I'm twenty four weeks today. Now, if it was like how it was with the twins it would mean I would deliver in 8 weeks... with how it was with Samuel... 6 weeks. BUT I don't think we're on that trajectory.

I saw the doctor on Friday. He's very pleased with baby's development and my lack of abnormal fluid. Everything looks A-ok right now.

I have been having bouts of vertigo so my OBGYN is referring me to a neurologist to get it checked out. I'm sure it's a combination of weird blood sugar problems and the heat... and the fact that my body gets WEIRD during pregnancy.

This past week I took Michael in to see the doctor. He had a fever for over a week. It would dissipate with Tylenol but then return... Michael had a chest x-ray and blood work done. Looks viral. This too shall pass.

Samuel was diagnosed with Impetigo. It's a common skin infection caused by bacteria. It causes a single or possibly many blisters filled with pus; easy to pop and -- when broken -- leav…