Journal History

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Sunday, January 4, 2009 0:21 AM CST

January 4,2009,2008,2007, 2006, 2005, 2004….January 4, 2003


I can never look forward on January 4th. I can only look back. That’s where I find her sometimes. In the bed. With me and Dan. With a fuzzy blanket. With the glow of a hospital light somewhere just behind us. With the beeps of the monitors. With the sound of our hearts breaking into a million pieces.

I can never look forward on January 4th because she won’t be here today…or tomorrow…or the next day. Not physically anyway. I carry her in my heart, my thoughts, my memories. There is not a second that goes by that I don’t think of her and long to hold her.

So I look back….I look to January 4th 2003. There I find myself holding a brave, sick, bald little girl who loved Mommy to hold her and Daddy to spoil her…There is where she shed her disease and her pain and found peace and comfort. There is where she let go of this life to embrace the next.

She is my forever baby. She always will be.

Janet

Wednesday, March 19, 2008 9:10 AM CDT

Happy Birthday Janie

Love,
Mommy

Friday, January 4, 2008 8:50 AM CST

January 4, 2008

I counted it in my head a hundred times. It can’t be 5 years. It can’t be. So, I count again. The numbers don’t lie.

Five years ago Janie died. Silent. Quiet. Gone.

I’m trying to only remember her laugh…her smile…her giggle. I want to think of her beautiful hair and her soft voice. I want to think of her courage and gentle nature.

I’m trying not to remember her pain…her suffering…her headaches…bone pain….stomach aches…

It’s hard to think of one without the other…the happiness without the eventual pain…and the pain despite the happiness.

Five years and I am no better than I was that moment she slipped away. I’ve only learned to control my emotions. I have buried deep inside myself much of my pain. If it begins to surface, I push harder.

None of this really matters. It doesn’t change a thing. It doesn’t matter if I post a journal or write or cry or laugh. I can’t change any of it.

Today, while the kids are in school, I will let myself grieve…but only up to a certain point. One step too far and I’m gone. I can’t go too far….because I have to prepare for the questions my other children will ask today as they struggle to remember the details of their sister’s death. They miss her and they struggle with fleeting memories. They were so young and they recall bits and pieces but need me to put it all together and give it perspective. Haley was only 8…Anna was 6…David and Daniel were 4.

Today is Dan’s birthday. We always watch his lead on this. We only celebrate to the degree he feels up to. He left for work before dawn this morning so I’m not sure yet what he wants and we always respect his wishes as to what to do. More than likely, we will spend the afternoon at the cemetery.

Without Janie today…
Janet

Monday, March 19, 2007 9:12 PM CDT

Happy 10th Birthday Janie...
I miss you...
Mommy

Friday, January 5, 2007 9:48 AM CST

We made it through yesterday. Dan’s birthday and Janie’s angelversary.

I woke up on January 4th at 4 a.m. Dan was already awake. I wasn’t surprised. This was the exact time 4 years ago that we were both in bed with Janie at the hospital and spending our last moments together.

I don’t normally wake up at 4 a.m. It wasn’t a coincidence. It wasn’t a fluke. Just a little miracle to let us know we still have a connection with our little girl.

There are other moments, other little miracles, that let us know she is waiting for us…

There is a park next to Janie’s school. It was being refurbished when she was sick. A bunch of kids had their painted handprints put on tiles and placed at the entrance of the park. Just the other day a friend of mine took her 2 year old and 1 year old nephews to that park. The aunt told them to go with her to look at the tiles.

The 2 year old boy went straight to Janie’s handprint and put his hand on it.

Out of the dozens and dozens of handprints…it was Janie’s he was drawn to.

I’m not surprised. It makes me smile and it gives me hope to get through one more day. It gives me just a little more patience on a day when I think I will crumble if I don’t get to see her very soon.

4 years is a long time to not be with your baby. We miss her. We ache. We cry. We go on….until we see her again..

Forever Missing Janie,
Janet

Wednesday, November 1, 2006 12:41 AM CST

I still get out five plates for the children. Five little drinking cups. Five sets of utensils.

When will I ever stop that? Or will I ever stop?

We took the children trick or treating last night. I felt all night that I missed something. I did. I missed getting five costumes together. I wonder what Janie would have wanted to be this year. I wonder if she would still dress up like a princess. Haley and Anna are way past that. I miss the princess costumes.

Mainly, I miss Janie.

I still wake up in the middle of the night and think of her. I think of her during the day while I do household stuff. I think of her when I do carpool. I think of her all the time. It never leaves my mind. Grief is my constant and unrelenting companion.

Yes, her bed is still set up next to mine. When I wake in the middle of the night or when I wake in the morning, I touch her bed and think about her. I think about when she was snuggled underneath those covers and her purple bedspread and I could hold her all night long.

Haley, Anna, Daniel and David occasionally sleep in Janie’s bed. To them it is the highest of all rewards to get to sleep there. That is the prime spot to be. Sometimes I wonder if it makes them feel closer to their sister. Sometimes I wonder if they beg to sleep there because they are grieving.

I guess this is all normal. We struggle. We go on. Each day is new….but the grief is still the same.

Forever Missing Janie
Janet

Sunday, June 18, 2006 5:50 PM CDT

Father's Day.....

It's been a while since an update. I've thought many times that I needed to put in a new journal. I haven't been too busy...or I haven't been at a loss for words. It is simply hard sometimes to put it all together.

But for Dan...I thought I would simply say Happy Father's Day. We had a good day that was all about Daddy. The kids enjoyed giving him their gifts and they enjoyed taking him to see "Cars" at the theater.

He had a good time. It was hard though. I've known him for a long time. I know every expression on his face. I know his entire body language. I can read him a lot better than I think he can read me. And today, it was painful to watch him.

He smiled.
He laughed.
He hugged and kissed.

But his heart was simply heavy. Missing Janie. I could see it in his face and in his eyes. When no one else sees him...I do. I wish he could just hold her for a moment today.

Forever Missing Janie,
Janet

Sunday, March 19, 2006 0:18 AM CST

March 19, 1997

Ten perfect fingers.
Ten perfect toes.
Dark curly hair.
Big brown eyes.

It was an easy delivery. Maybe just a few hours long. It was just easy. Haley and Anna came to the hospital to meet their new little sister. Anna was barely a year old and she just kept looking at her and boldly saying “BABY! BABY!” Haley was much more interested in the fruit basket someone brought until we let her hold her new sister in my bed.

The baby was Jane Ellen Sims. Back then we called her Jane or Jane Ellen. It took a while before we realized that she was “Janie” all along. She knew….it just took a while for us to know.

Janie was born a few weeks early…almost a month early. While I was in the hospital I found out the day after Janie was born that our next door neighbor had delivered her new son and they were just down the hall. Well, I felt so good that I wrapped Janie up in my arms and walked right down the hall to see my friend and her new baby. Not long after that the nurses gave me a good lecture that I was not suppose to be walking around the hospital with my baby. Hospital policy or something. But oh well, I felt so good and I wanted to show Janie off to everyone.

Still, when we got home, Janie was easy. She slept and ate and cooed. She didn’t cry much. And after having two other children, I felt experienced. I toted her around with expertise and I think that made her even happier.

But then life kept twisting and turning. And somehow we faced her leukemia…and her relapse…and her fight…and her pain…and her last moments…

And then nothing was easy again.

Today Janie would be nine years old. Nine. I can hardly believe it. I feel like it was yesterday that I welcomed her into our family. So much hope….so much love…so much fun…

If she were here today we would have a party with all her sisters and brothers and all the neighborhood kids and all her school friends. I wonder what kind of party she’d want…Maybe roller skating, or bowling, or ice skating. Maybe she’d want a princess cake or a chocolate fountain. Maybe she’d want us all to meet at the movies and see something funny. Maybe she’d want a puppy.

See…it just isn’t easy anymore. I have no expertise anymore. I have no idea how to get through these special moments like her birthday when she is not here to tell me if she wants a Barbie or an Ipod…or a new dress or a new pair of sparkly jeans….

It’s just not easy.

She loved Kenny Chesney’s songs. And I can’t help but think of his new song “Who You’d Be Today”

Sometimes I wonder, who you'd be today
Would you see the world
Would you chase your dreams
Settle down with a family
I wonder what would you name your babies
Someday's the sky's so blue
I feel like I can talk to you
Sometimes I wonder, who you'd be today

Sunny days seem to hurt the most
I wear the pain like a heavy coat
The only thing that gives me hope
Is I know, I'll see you again someday
--------
Today is a day full of many emotions. A birthday is suppose to be full of happiness and fun….looking back and wondering what’s ahead. Today, I do wonder... I wonder how tall Janie would be today. I wonder who her teacher would be this year. I wonder if she’d still have the same best friends. I wonder if she’d sing in the church choir. I wonder so many things.

But I stop. Wondering all those things hurt. Wondering how I will survive another day without holding Janie in my arms is just too much to bear.

Instead, today I will think of her birth. Her sweet smile. The dimples on the back of each shoulder. The warm brown eyes. The smell of her skin after a long bath. The sound of her giggle. And beauty of her smile.

Happy birthday Janie. We are celebrating for you here on earth. We are making your favorite foods and making a cake with tons of icing. We miss you with all our hearts and souls and breaths. We hope your celebration in heaven is incredible.

Forever missing Janie,
Janet

Tuesday, February 21, 2006 11:09 AM CST

It's been a while since I updated. We are still doing okay. The children are busy with basketball, dance, gymnastics, school, etc. All that sure keeps me busy.

We are still waiting on snow here in Birmingham. Looks like another year of only seeing a few flurries. We actually spend a lot of the Winter in shorts and flip flops. Occasionally we need a jacket. The kids don't like my stories of growing up in Tennessee and getting to sled and build snowmen. I just keep my mouth closed and keep my eye on the weather. Maybe one day they will get to spend some time playing in the snow. For now we'll try to enjoy the mild Winters of Alabama.

Janie's birthday is coming up next month. I will try to update before then.

Forever Missing Janie,
Janet

Wednesday, January 4, 2006 2:28 PM CST

Nothing is easy today. It isn’t easy to breathe or think or talk. The calendar keeps telling me it has been three years since Janie left…but I don’t believe it. Sometimes it seems just like yesterday….because the feelings are just as raw. Sometimes it seems like a hundred years….because one minute without my little girl is agonizing. Time is not healing me…Time is my enemy.

Despite my grief….despite my pain…despite everything…I still somehow manage to feel grateful. I am so thankful that I got to have Janie, even for a little while. I am so grateful that I got to hold her and love her. I am so proud to be her mom.

We are leaving now for the cemetery. It won’t be easy to breathe there…or think…or talk…But I will. And then we will write messages to Janie on pastel balloons and we will release them into the sky….and I will remember that I held her in my arms until her last breath three years ago today…and I will thank God for every moment I had with a sweet little girl named Janie.

On Janie's angelversary...
Forever Missing Janie,
Janet

Sunday, December 25, 2005 2:32 PM CST

Merry Christmas!

We are doing well here. The kids didn't sleep well last night....just way too excited. (At 3am I found Anna and the twins in her bedroom with all the lights on...they were talking and writing notes and just playing! AT 3 A.M.!!) Anyway, Dan and I are really tired today!

We have opened gifts today, played with new toys, eaten lots of chocolate, gone to church, visited with friends, and now, we are getting ready to go to the cemetery.

We are tired, and thankful, and sad, and happy and everything rolled into one. We hurt for those who are grieving with us today. We hurt for those who had to spend Christmas in the hospital. We rejoice in those who are beating childhood cancer. We rejoice in the meaning of today- the birth of Christ.

Much love to you all. Merry Christmas.

Forever Missing Janie,
Janet

Monday, December 19, 2005 4:06 PM CST

Just a short update. I'm doing okay. Three years ago today was Janie's stem cell transplant......She has been on my mind all day. I think I'm handling it well. Thanks for checking in on us.

Forever Missing Janie,
Janet

Thursday, November 24, 2005 9:42 PM CST

Thanksgiving Day is almost over. The sadness that will swell for the next few weeks has already begun. We still have to get through December….with thoughts of Janie’s stem cell transplant….with thoughts of unopened Christmas gifts Janie still has from 3 years ago…with thoughts of January 4th and her last breaths.

But for now…I’m just trying to get through the day. And as I think back, I’m sure that the most thankful Thanksgiving I have ever spent was November 28, 2002. Janie was in the hospital and we ate Thanksgiving dinner off disposable plates. We had everything sprawled out on Janie’s bed and we got to share our last Thanksgiving dinner we would ever share as a family of 7.

I was so thankful for that day.

Today, well, it’s difficult. Sometimes it’s hard to fight back the sadness…the emptiness…It’s certainly hard to fight back the enormous hurt that affects my spirit.

It’s been so long…and I still feel so broken.

I am so broken.

Forever Missing Janie,
Janet

Sunday, November 6, 2005 9:31 AM CST

Today, Dan and I have been married 12 years.

He left early this morning to get the oil changed in his truck and I spent the morning watching the old “Back to the Future” movies with the kids before we all had to get ready for church.

So far…the anniversary - not quite so romantic…but maybe the rest of the day holds some hope…

As I watched the old Back to the Future, I saw as the Michael J. Fox character went back and forth in time…back to 1955, then 1985, then 2015…..Each time his character was surprised about his life, his future. Sometimes he was horrified and sometimes he was pleasantly surprised.

I can understand that.

On November 6, 1993 I married Dan with great anticipation of the future. Where would we live?? Would we have children?? How many?? Would I work or stay at home?? What kind of car would I drive?? Where would we spend our vacations??

I wonder if 12 years ago today if I had seen the future what I would have thought. The only thing I know is that I would have been surprised at how my life has gone.

Just 10 months after we married, I was 30 years old and had my first child – Haley. When I was 31 I had Anna….when I was 32 I had Janie…when I was 33 I had David and Daniel.

I had literally labored for a few years. I was ready to fall into a nice steady rut of changing diapers, cleaning house, and one by one getting them into school. Then, I would catch my breath and figure out where to go from there. I would then figure out what my purpose was in life.

But I didn’t have to even worry about that. God gave me my purpose in life. When Janie was diagnosed with leukemia, our future was firmly set….Our life was about childhood cancer.

Do you think that 12 years ago at the verge of marriage that I could have handled being told that by marrying Dan and building a future with him that our future would have been so focused on cancer?? I don’t think so.

But of course, life doesn’t work that way. We don’t see the future. I think the Back to the Future movie even supports that that is the best thing because given the chance, we would try to alter or change the outcome. I wonder what I would have changed.

This time 12 years ago, I was probably nervous, happy, excited….and deliriously in love. My life was about to happen. And it did. God blessed me with 5 beautiful children. I’ve had 12 years of just about everything life can throw at you. Dan and I are on a completely different course than we both anticipated but it is a course set by the purpose we were brought together for. We get to raise 4 sweet children here on earth. We get to look forward to reuniting with our sweet little Janie in Heaven.

Though I may have our life sounding like a cute little package tied up with a rainbow, you all know us. You know our intense pain and our frustration as we so desperately want a cure for childhood cancers. We struggle from day to day.

But, our purpose of our life stares us in the face each time another child is diagnosed with cancer or relapses. And unfortunately, in our community just recently there is one more little boy with a brain tumor and one little boy facing a relapse with neuroblastoma. Their families never anticipated those things. Their life wasn’t suppose to be like that. Life for them has taken a different path.

Sometimes I think about what will happen to us in 12 more years…..but I just try to focus on our life right now and let God’s will lead us on…..I’ll leave obsessing about the future and time machines to the movies……


Forever Missing Janie,
Janet

Thursday, October 6, 2005 9:45 PM CDT

October 6, 2005

Four years ago today I held Janie in my arms in an ER room. She was tired. She was pale. She was so sick.

Four years ago today we were told she had leukemia and that it was going to be a long fight but they felt she would one day be a healthy little girl again.

Four years later, here I sit….without my Janie….

I have been home most of the day. I am thinking of when Janie was diagnosed and the disbelief I felt. Well, I still feel disbelief….just now, the disbelief is in the fact that she died. I still can’t wrap my brain around the fact that Janie is never, ever coming back home.

I haven’t cried today. I think I have been too sad. I’m mostly reflective and quiet. But most of all, I think if the tears begin now, I’m not sure if I will ever get them to stop again.

I pray for the end of this day.

Forever Missing Janie,
Janet

Wednesday, September 14, 2005 8:31 AM CDT

I know...it has been a while since I updated. Everyone got back in school and I thought I'd have more time to catch up on stuff but we are still busy, busy, busy....Dance, Soccer, Baseball, Gymnastics, etc....and oh yeah, homework has to get thrown in there somewhere!

But more than all our everyday busy lives, I think I am again in my "ignore" mode. I'm trying to ignore the glaring fact that I still am in the depths of grief. I'm trying to ignore the fact that I still set out dinner plates for 5 children. I'm trying to ignore the fact that Janie's bed still sits beside mine...and every night I touch it and wish she were in it sleeping peacefully.

So...I'm trying to ignore all that...trying to deny...trying to go on with other aspects of my life...trying to just get on with my other children....so, we do dance, soccer, baseball, gymnastics.....

Forever Missing Janie,
Janet

Sunday, August 14, 2005 7:21 PM CDT

3 days to go….

New tennis shoes have been purchased….Clothes picked out….pencils sharpened….and the backpacks are waiting anxiously in the hall….

Now…just 3 more days before bells ring all over town at our schools. YEAH!!

Haley will be in 5th grade, Anna will be in 4th, Daniel and David will be in 2nd.

Janie should be in 3rd.

Again, with everything in our life now, our most exciting, fun moments are tainted with sadness. I should be meeting 5 new teachers this week. I will only meet 4. I should have bought 5 new pairs of sneakers. I only got 4. I should have helped pick out 5 new backpacks. I only helped with 4. And as happy as I am that school is starting for my “4”, I will be painfully reminded that Janie is not here with us.

Forever Missing Janie,
Janet

Saturday, July 23, 2005 3:08 PM CDT

Over 5 months ago a bunch of us ran the Mercedes Marathon for the Leukemia & Lymphoma Society. We wore our bright purple shirts with pictures of our honorees pinned to the back. I knew that when anyone passed me (which was several thousand people!) that they would have to see the pictures. They would have to know why I was there. And they did.

Many marathoners would pat me on the back and as they passed me, they would whisper something like “good job” or “what a great cause.”

I would never know quite what to say back and usually I didn’t have the extra breath to even whisper anything back to them. So I just smiled awkwardly, looked down and kept going.

But…now that I’m sitting at my computer in a comfortable room and my running shoes are way back in the very back of my closet….I can finally think what my response should be.

To all of you who passed me by…and saw the pictures of my honorees….and offered me some words of kindness and support, I would like to tell you this:

“Did you see the great pictures on my back? Did you know that they are great kids? Did you know they were just regular kids doing regular kid stuff…just like your kids….and then they and their families were told they have cancer?”

And then I would say….. “These kids go through unbelievable harsh chemotherapy. They are poked and stuck and x rayed and they spend way too much time sitting waiting on the doctor….waiting on the CT scan….waiting on the radiation. They are put through a gazillion bone marrow aspirations and spinal taps. They go through the worst pain you can imagine and are expected to show up again and again and again…and do it all over. And the parents have to take them to these horrible events.

Then…the parents have to watch over and over and over again as their most precious little child is put through this all over again. And they see the most courage they have ever seen or will ever see as they watch their child do as they are told….hold out their little arm to be subjected to another needle…or they hold out their little leg to have another leg shot deep in the thigh. And the parents watch as their child pukes and shakes and cries…again…and again….and again…”

But even if I could whisper all this back to a marathoner passing me….it still wouldn’t begin to describe every facet a child endures with cancer or it doesn’t begin to describe every facet the parents and siblings endure….but it is a start.

Yesterday, another Birmingham mom and dad had to bury their child after he had fought his leukemia for a long time. When I saw them greeting everyone at their son’s visitation, I was immediately taken back to when I was the one greeting everyone for hours at Janie’s visitation. My heart broke for them and for me and for everyone else who has been in our position. There is no easy road from here. There is no fast pass to get out of the grief quicker. It is a long road and it is filled with twists and turns.

As I left Todd’s visitation, I realized one thing….I never thought I could live this long without Janie. After she died in my arms I thought I would surely wither up and die too. But somehow, God has helped me to keep going. I am still breathing….even though sometimes I don’t want to. And I am still functioning…even though I thought I couldn’t take another step. No doubt…God has carried me through these last 2 ½ years….and He will now be there for Todd’s parents and sister.

I don’t know if I will ever run another marathon again but I will always remember the Mercedes Marathon of 2005. That was the marathon that I wore a picture of Todd Stevens smiling at the camera and wearing a red baseball cap. That was the marathon that every step I made I was thinking of Todd and all my honorees. I had no idea that 5 months later I would be at his visitation and offering my weak words to his parents.

You may offer your support to Todd’s family at his caringbridge page (.org/al/todds).

Forever Missing Janie,
Janet

Thursday, June 16, 2005 11:26 AM CDT

I’ve never been good at writing how my grief really feels. But then again, no one has. There are volumes and volumes of words that have been written since the beginning of time trying to describe what grief feels like…the stages of grief….the different types of grief. Now there are websites ad infinitum…all trying to explain to others about grief.

But we have all failed. I blame grief itself. Grief was never meant to be explained with consistent definity. The only thing I know for certain is that it is consistently changing.

Since my daughter Janie died, I have mourned in many different ways. Mostly, I grieve alone. When I am alone, I can allow myself the deepest, darkest, most honest grief. My grief is selfish and exclusionary…But I don’t know how else to do it.

Recently I was reminded that “I” am not the only one grieving. Each of my children here on earth has gone through their own significant grief lately. Without revealing too much about their own personal life, I will say they too each grieve differently. While some of my children allow themselves to let the tears flow, others don’t find it so easy….they don’t even recognize the signs of their sadness. In those cases, grief starts to reveal itself very slowly…I usually notice my child isn’t quite their self….maybe things that normally don’t upset them suddenly become a huge deal.

Then, as the grief has nowhere else to go…it surfaces. Then they cry. I cry. We remember Janie. We talk and cry and talk and cry. I tell them everything they are feeling is very normal…every feeling is valid…just let it go…let yourself be sad, mad, hurt or whatever….let it flow. I tell them they are allowed to feel it all.

Then we start telling “Janie” stories…funny stories…and I see the eyes begin to dry a bit. The sniffles subside for the moment. Quivering mouths upturn just a bit. A little giggle emerges.

For the moment, the grief subsides. For the moment, the grief is purged. For the moment, my child can remember their sister with a smile….

How my heart aches as I miss Janie…….But my heart also aches as I hold Haley, Anna, Daniel and David in my arms as they too miss Janie. Their hurt is so deep, their tears so full, the pain so real. They are so little and yet having to deal with such huge feelings. I will never know the depth of their mourning but I do know the depth of their love for Janie. She was easy to love. All my children are easy to love.

So yet again, I have tried to define grief….I have tried to understand the road of mourning for not only myself but for my earth children. Again, I blame grief for being so undefined, so strange, and so unrelenting. My only salvation is through the grace of God as he gently leads us out of the sea of mourning and back into his light…our tears wiped dry…our sobs turned into smiles….until our grief once again surfaces….

Forever Missing Janie,
Janet

Sunday, June 5, 2005 5:13 PM CDT

Hello again! I know...2 updates in 2 days!Wow! But I wanted you to know I think Dan
will be on the local Birmingham segment of Children's Miracle Network telethon
again tonight around 7:30pm. It's live TV so you never know exactly when it will be.

We picked up Haley, Anna, Daniel, and David from Sibling Camp at Camp Smile-A-Mile earlier today. They are so tired and worn out from all the weekend activities that I'm sure it will take all week for them to recover. I hope they will be able to see their dad on tv this evening!

Until later...
Forever Missing Janie,
Janet





Saturday, June 4, 2005 8:57 PM CDT

Just wanted to remind everyone that the Children's Miracle Network is on this weekend.
We just got back from Huntsville where Dan was interviewed on live TV (about the
Alabama Curing Childhood Cancer Car tag) for their local segment. Later tonight
he will be interviewed for the Birmingham local segment (I think maybe around 10:30pm).

Until later....
Forever Missing Janie,
Janet

Saturday, June 4, 2005 8:57 PM CDT

Just wanted to remind everyone that the Children's Miracle Network is on this weekend.
We just got back from Huntsville where Dan was interviewed on live TV (about the
Alabama Curing Childhood Cancer Car tag) for their local segment. Later tonight
he will be interviewed for the Birmingham local segment (I think maybe around 10:30pm).

Until later....
Forever Missing Janie,
Janet

Saturday, June 4, 2005 8:57 PM CDT

Just wanted to remind everyone that the Children's Miracle Network is on this weekend. We just got back from Huntsville where Dan was interviewed on live TV (about the Alabama Curing Childhood Cancer Car tag) for their local segment. Later tonight he will be interviewed for the Birmingham local segment (I think maybe around 10:30pm).

Until later....
Forever Missing Janie,
Janet

Thursday, May 5, 2005 11:01 AM CDT

Hey everyone,

Things are going okay here. Last week I ran the Country Music half marathon in Nashville, Tennessee with my sister Karen. I haven’t really run much since the Mercedes Marathon in Februay, but somehow I managed through. I think my time was around 2 hrs 27or28 minutes and of course I ran with my purple TNT shirt (with Janie’s picture on my back) for the Leukemia & Lymphoma Society.

Yesterday my oldest daughter Haley received a Citzenship Award from her school. The school contacted me several days ago to tell me so I could be at the assembly but I had to keep it a secret from her! That was so hard to do! But I didn’t let the cat out of the bag and my reward was seeing her joy when they called her name as one of the recipients!

Today I had a treat….Two mother’s day teas with my twins! I got to see Daniel’s program at 8:15am and then David’s at 9:00am. I was running back and forth between the two first grade classes but it was worth it…I was showered with gifts and lots of hugs. I also had many wonder treats like green punch, nuts, mints, and in one class, I even got Doritos! Breakfast of champions! Now I definitely need a Tic Tac! And, now I’m getting ready to have lunch with Anna at her school...I think the theme of today is “EAT, EAT, EAT!”

Dan is fine. He struggled several weeks with the flu but I think he is finally back to 100%.

Now, Mother’s Day is approaching fast. I figured I better update now because I definitely won’t have the inner strength after Sunday. I’ll miss my mother. I’ll miss being a mother to Janie. And, I will have to smile through it as Haley, Anna, Daniel, and David treat me like royalty.

A few weeks ago I had some bad days. I spent much of many days in bed. It felt like the grieving that I go through on a holiday or Janie’s birthday or something like that. But it was not a holiday or anniversary or anything. It was just another day without Janie.

That’s the nature of grieving. It isn’t just on those few days out of the year like Mother’s Day or Christmas or a birthday that make you hurt more. Grieving happens all year long….all day long…and sometimes, it happens even worse on those ordinary days….Those are the days that it sneaks up on you when you least expect it.

I’m expecting to hurt this Sunday. I can somewhat prepare mentally for it. I can think back to my very favorite Mother’s Day, back when I had all my children with me. We went to Oak Mountain. We hiked. We splashed in the clear pool of water at the base of the waterfalls. The children’s giggles echoed through the trees. I wish I were there right now.

My life began when I became a mother. Before that, well I guess it was all prep work. But nothing changes a woman’s life more than being a mom. On Sunday, I will be celebrated for that. I love Mother’s Day more than any other holiday because I love being a mother more than anything else in the world. (I don’t get paid in dollars for all the work I do even though some group has compiled data and said that mothers should be paid around $130,000 a year for the work…and most of that is in overtime.) But I am paid in person….with every hug….every kiss…with smiles….when they hold my hand….I am paid with every great dental check up …..every great report card….when the boys win or lose a ballgame and they are happy either way….when I see the girls in the dance recital…..I am paid every night around the dinner table when I look in front of me and see the beautiful children that God lets me call my own.

But then I count them….1…2…3…4……And my heart is so heavy….it is surely filled to the rim with teardrops……..

Please God, tell Janie I miss her. Tell her I love her. Tell her all the great things her sisters and brothers are doing. Tell her that they talk about her every day and with wide eyes and imaginations soaring, they ponder all the great things she is getting to do in heaven. God, tell Janie I’m thinking of the Mother’s Day at Oak Mountain…..she’ll know what I’m talking about…..And lastly, tell her I’m glad I’m her mom.

Forever Missing Janie,
Janet

Friday, April 8, 2005 11:01 AM CDT

Hey everyone,

It has been a while since I updated so I thought I'd just let you know we are still here and okay. The boys started baseball not too long ago but we keep getting rained out. The girls have had SAT tests all week and are thrilled that the teachers haven't assigned any homework.

Dan and I are doing okay. We made it through Janie's birthday on March 19th. Haley, Anna, Daniel, and David each made a birthday cake for Janie and decorated it. We also took balloons to the cemetery and released them for Janie. We stood and watched the 7 balloons race through the clouds.......

Forever Missing Janie,
Janet

Saturday, March 19, 2005 5:50 AM CST

March 19, 1997 - Jane Ellen Sims was born……..

But she was never meant to
turn 6 years old
or 7 years old
or 8 years old

She was never meant to
Finish kindergarten
Be a cheerleader
Sing in the Kindergarten program

She was never meant to
Have a sweet sixteen party
Make an A on an algebra test
Make an F on an algebra test

She was never meant to
Be a counselor at Camp Smile a Mile
Have a first kiss
Ride the Scream Machine

She was never meant to
Take a first plane ride
Go skiing in Gatlinburg
Go to Key West

She was never meant to
Graduate, marry and have children
Have a first gray hair
Or live a long healthy life


But……….

She was meant to
Bring beauty to this world
Bring happiness and love
Bring meaning to her family

She was meant to
Inspire a family
Inspire a community
Inspire a world

She was meant to
Remind us of God
Show us His love
Teach us life is short

She was meant to
Help us be better
Be a light in a dark world
Melt even the hardest of hearts

She was meant to
Show us to share
Help us to smile
Get us to look up more

She was meant to
Say “I want to go to Heaven”
Say “ I can’t wait to see Jesus”
Say “I love you”

Some days, on the darkest of days……I think of all Janie has missed. I think of all the joy she could have experienced here on earth. I think of all the misery I could have missed out on if she were only here.

But, I have to remember that in God’s plan, Janie’s life here was perfect, despite the length, it was perfect. She inspired and continues to inspire. She was strong, faithful, loving and kind. She was all God wants us to be. Because of her, I look at my own life differently now. Because of her, I wonder….am I doing enough to help others? Am I being kind enough? Am I aware that one day I will die and have to answer for the life I’ve led? Am I making the most of what I have been given? Can I do more?

If you have come back over and over to this page, you surely have asked yourself some of the questions I now ask myself. Even those out there that say you are atheist, or agnostic or whatever. Maybe you really aren’t. Maybe you are really searching Janie, her life, her fight, her death. Maybe you have asked God a million times why He took Janie. Maybe God has tapped us on the shoulder a million times and we have ignored Him….but because of Janie, we stopped…turned around….and are paying attention to why God tapped us on the shoulder.

There are so many things Janie was never meant to do, or places she was never meant to go….But she was meant to be a child of God, a light for the world, a disciple of Christ….and she did all that in just 5 years…..what about us?

Every day I see things in my life I have done wrong, or said wrong….But having Janie….having all my children was so right and they make me strive each day to try to be better.

Eight years ago today Janie was born. She was sweet. She was perfect. She was my life. She is my life. How I wish for a moment I could go back in time…even for a brief moment…and hold her in my arms again….tell her “I’m your Mommy!”…I wish I could brush her cheek with my finger and kiss the tip top of her head….I wish for a brief moment I could hold her in my arms and, like the moment she was born, be full of hope for her future.

Janie, I miss you little girl. I miss your eyes, your voice, your laughter, your smile. I miss your sweetness, your strength, your sweet soft soul. Thank you for sharing your life with me. Thank you for letting me be your mom. Thank you for showing me the way. I love you.

Forever missing Janie
On her 8th birthday
Janet Sims

Tuesday, March 1, 2005 3:13 PM CST

Curing Childhood Cancer Car tags are now available in the State of Alabama !!!

Many people in this state have helped to make this a reality. It has been an awesome experience from seeing the first paper copy of the car tag image to today...when we attached the first tag issued in our county to our vehicle. Now I can't wait to be driving down the street and see someone else with a Curing Childhood Cancer Car tag! I know that with each tag sold, the proceeds will go to Children's Hospital of Alabama to cure childhood cancer.

So those of you who are in Alabama........Please go now and get your Curing Childhood Cancer car tag! And if you have any questions about the car tag, call my husband Dan at (205) 218-7452.

Forever Missing Janie,
Janet

Monday, February 28, 2005 9:52 AM CST

Hey everyone....I told you it would be a while before I got back with an update ! This will be a short one...

YES! I did finish the Mercedes Marathon on the 13th and NO...they didn't have to come find me wandering hopelessly lost in downtown B'ham! I actually finished in 5 hours 16 minutes and 20 seconds....a whopping 45 minutes faster than I did the Marine Corps Marathon. YEAH!

For those runners out there that want DETAILS...I'll try to compose another update.

For now...
Forever Missing Janie,
Janet

Saturday, February 12, 2005 10:10 PM CST

Okay…This time tomorrow I will be done with the Mercedes Marathon. (Well, the course will officially be shut down and I HOPE I’m not still out there wandering around downtown Birmingham!). Anyway, I thought I’d better throw in a little update now because I may be out of commission for a while afterwards.

I’ve been pretty emotional today. Alright…I’ve downright cried a few times. I think that before my first marathon, I was too blissfully ignorant about how hard the task was…..But with this marathon, I know how brutal it can be. I think that as long as my leg shows no sign of iliotibial band syndrome that I’ll be okay.

This past week, the dreams started. I guess they are more like nightmares. For those of you who have ever done a marathon or a half, you know. It is the dream where you are in the marathon doing great. Then everyone runs past you and you are hopelessly lost and the panic wakes you up. Well, I dreamed that along with some other similar marathon dreams.

But I also dreamed of Janie. It was vague but I knew it was a Janie dream. She was there to remind me that my mission for this marathon was already done. Our Alabama/Gulf Coast team raised over $150,000 for the Leukemia and Lymphoma Society. Our Birmingham team alone raised $43,000.

To be honest, I really don’t have to even show up tomorrow morning for that money to be counted. But, of course I will….I made the commitment to run and many of you made the commitment to donate. That was the business deal.

But tomorrow morning, business will be set aside…..This is personal. I will wear my purple shirt and on it will be pinned Janie’s picture along with our honorees and others. The longer I am out on that course, more people behind me will see their beautiful faces…more people will be reminded that leukemia is real…..more people will pay attention to the next purple shirted runner/walker they pass. Tomorrow....we will make a difference...

Until later….

Forever Missing Janie,
Janet

Friday, January 28, 2005 8:40 AM CST

Just a short update. I wanted to let those of you who are following my marathon training know that all is going well. I'm running about 30-40 miles a week now and I do my long runs on Sundays. A couple of weeks ago I did the longest run we are scheduled for (20 miles) and now I am in the tapering phase. I think this Sunday I only have to run 13 miles.

Anyway, this is all leading up to me running the Mercedes Marathon in Birmingham on February 13th for the Leukemia and Lymphoma Society. I know after I did the Marine Corps Marathon, I was exhausted and wiped out. Part of me is surprised I would ever attempt another challenge of a marathon. But here I am again and I am scared of that day in February. I hope I can hold up and be strong that day for our honorees...for Janie....for a cure.

Forever Missing Janie,
Janet

Tuesday, January 4, 2005 9:25 PM CST

Today is a day of life and a day of death. It is a day I wonder if I can make it through.

Two years ago today my daughter died in my arms. My sweet little 5 year old Janie had lived an incredibly short life. After fighting for 15 months, she had suffered enough and the Lord relieved her of her suffering.

I remember bits and pieces of the hours after she died. I remember my sisters carrying me to a car. I remember my friend Susan meeting us at the front of Children’s Hospital and driving us home.

The drive home was cold….quiet…long. The sun was coming up and I slumped over on Dan. I felt defeated and miserable.

Shortly after we got home, Dan and I crumbled onto our bed. It was the first time in a month that we had even been in the same room together by ourselves (the Stem Cell unit only allows one parent at a time so we had pretty much just seen each other as we switched from being with Janie and being with the other 4 children). That morning it felt odd to be beside him. I kept thinking about how tired I was. In my whole life I had never been so exhausted… and I have never felt that deep exhaustion since the morning of January 4th, 2003.

Last night I kept waking up over and over. I would wake Dan up and ask him what time it was. 12:30…..2:30……Then 5:30 a.m.

Dan knew I wouldn’t ask again. We both knew why I was asking. Janie died around 4:15a.m. and I wanted to know if 4:15 a.m. had passed. I tossed and turned all night last night thinking about two years ago when I knew Janie’s spirit was too strong to stay in her earthly body anymore.

January 4th……Dan’s birthday….and the day our little girl Janie died….

Forever Missing Janie
Janet

Tuesday, January 4, 2005 9:25 PM CST

Today is a day of life and a day of death. It is a day I wonder if I can make it through.

Two years ago today my daughter died in my arms. My sweet little 5 year old Janie had lived an incredibly short life. After fighting for 15 months, she had suffered enough and the Lord relieved her of her suffering.

I remember bits and pieces of the hours after she died. I remember my sisters carrying me to a car. I remember my friend Susan meeting us at the front of Children’s Hospital and driving us home.

The drive home was cold….quiet…long. The sun was coming up and I slumped over on Dan. I felt defeated and miserable.

Shortly after we got home, Dan and I crumbled onto our bed. It was the first time in a month that we had even been in the same room together by ourselves (the Stem Cell unit only allows one parent at a time so we had pretty much just seen each other as we switched from being with Janie and being with the other 4 children). That morning it felt odd to be beside him. I kept thinking about how tired I was. In my whole life I had never been so exhausted… and I have never felt that deep exhaustion since the morning of January 4th, 2003.

Last night I kept waking up over and over. I would wake Dan up and ask him what time it was. 12:30…..2:30……Then 5:30 a.m.

Dan knew I wouldn’t ask again. We both knew why I was asking. Janie died around 4:15a.m. and I wanted to know if 4:15 a.m. had passed. I tossed and turned all night last night thinking about two years ago when I knew Janie’s spirit was too strong to stay in her earthly body anymore.

January 4th……Dan’s birthday….and the day our little girl Janie died….

Forever Missing Janie
Janet

Sunday, December 19, 2004 3:29 PM CST

Hey everyone,

I found myself alone at home for a few minutes…quite a rare thing now that the kids are out of school for Christmas…So, I thought I’d update a little.

I am about 14 weeks into my training for the Mercedes Marathon I will run in February. I was scheduled to run 15 miles this morning. I really, really didn’t want to go. It was cold with gusty winds and I knew I would be spending the entire time by myself. Well, actually I wanted to spend the entire time running by myself. I was not in a great mood. My twin boys were up this morning at 5 a.m. and under foot as I was trying to get ready for my 6:30 a.m. run time. I ripped my favorite running socks. There was no gas in the car. I hate the running pants I bought the other day. Etc, etc….

But really, the reason I didn’t want to face the next few hours is because I would be thinking about last night when Dan and I went to a visitation for a little boy who had leukemia. His funeral is today.

Today, as I ran, I pictured the little boy in my head…over and over….I thought of the mother…over and over. Of course, it made me think of Janie. But I also thought of Daniel Wolfe…He is our honoree for Team in Training - Mercedes Marathon. He is not only surviving after his battle with leukemia…he is thriving.

I don’t know why one is taken…one survives….I thought of this a lot today as I did the 15 miles in the cold by myself. When I got back to my car, I still had no answers. Sometimes I feel like it is time for me to stop asking questions and just accept it….

Forever Missing Janie,
Janet

Thursday, November 18, 2004 8:37 AM CST

I posted a picture of Haley and Anna with Miss America....Check out the photo page.

Tuesday, October 26, 2004 10:59 AM CDT

So there we were. Dan and I, sitting at the Vestavia Country Club, on a Saturday night, wearing our formal attire…..and in comes Miss America.

The entire room is packed with beautiful people, all dressed in their best cocktail dresses and hair perfectly in place. We all stood and clapped as Deidre Downs floated gracefully to center stage. Her crown glowed and looked much more steady on her head than the night in September when she officially was no longer our Miss Alabama….she was now Miss America.

As far back as I can remember, I watched the Miss America pageant every year. My sisters and I would whip up a big batch of fudge, pour a huge glass of milk, and then we’d jockey for the best position in front of the TV. We sat glued to our spots as we watched each contestant come on stage and announce what state she was from. We could barely contain ourselves….We lived in Tennessee and it seemed forever before we got to see who we would be cheering for. But after a few minutes into the broadcast, we would have several girls we would pick for our top ten and we’d cheer them on to the top 5 and so on until the winner would be called.

As little girls, we all imagined what it would be like to be Miss America. To get that crown on our head. To make the walk. To wave to cheering fans. Wow. What a dream.

Then there I was last Saturday night. In a room filled with Miss Alabama 1940 something, and Miss Alabamas from the 1980’s and 1990’s. And the room was filled with the current Miss California, Washington, Arkansas, Tennessee, Idaho, etc…..We were all there to recognize Deidre and her accomplishments.

I was a long, long way from sitting in my jammies in my home as a little girl eating fudge and watching these graceful women on an old TV set. I was sitting right next to these ladies.

At one point in the program, Deidre went to the podium to speak. As I turned to watch her, I was distracted by a brilliant candelabra. It was in my view and I couldn’t quite see Deidre. Instead, I looked behind her. There were giant doors with mirrors just behind the stage. I watched Miss America through the reflection of the doors. It was appropriate, I thought. I was somewhat disconnected from the event. I really didn't belong.

As I looked around at the room, I saw all the pageant queens. I saw all the many people who were there because they were Deidre’s family, or sponsors, or board members, or friends. I suddenly became quite aware of why on earth “I” was there. The only reason we even know Deidre is because of Janie. We first met Deidre because we attended a Kandles for Kids event when they read off the names of children who had died since the last Kandles for Kids. Janie’s name was read that night a year ago. Deidre was at the event to start her Curing Childhood Cancer Car tag campaign.

If Janie had not had leukemia, if she had not died, we would not have gone to that event. We would not have met Deidre. We would not have worked so hard on the car tag campaign. We would not have known when Deidre won Miss Alabama. And we definitely would not have been invited to a fancy country club and sat in our best clothes, amongst the beautiful people, and been in the same room as Miss America… in person.

I was acutely aware that I was there because of Janie.
Because of her cancer.
Because of her fight.
Because of her death.

There I sat. With my hair in a french twist, my makeup carefully applied. Eating my filet mignon. Very sad amid the celebratory atmosphere.

Life is so strange. So odd. Don’t you just sometimes think of life’s journey….how harsh sometimes, how sweet, how weird, how unfair, how unpredictable????

We have met some incredible people along the way since Janie was diagnosed and since her death. I am thankful and honored to know so many caring people from our community, from the hospital, from Camp Sam, the Leukemia & Lymphoma Society, and of course, Miss America….But I think they would all understand when I say, I wish I had never met them….at least not in the circumstances in which I met them..maybe that is a better way to say it.

I know I say this over and over – Why did she have to die??? Why couldn’t she be here with me to make fudge and watch some beauty pageant? Why couldn’t she grow up and be Miss America herself? Why was her life so short and mine so incredibly long?? Why can’t I go on….why can’t I heal….why can’t I fade away….why must I endure a lifetime with a piece of me so far away….

Forever Missing Janie,
Janet

Saturday, October 16, 2004 9:33 PM CDT

Wow...it has been almost a month since I updated. I guess I couldn't do this for a few different reasons.

First, we have just been busy with life lately. Besides school, the kids have soccer, cheerleading, choir, gymnastics, and dance lessons. Homework has to get squeezed in there somewhere along with lots of playtime and lots of time for sleep to recharge us all.

Next, Dan had a wreck and totalled his truck when someone pulled out in front of him. He is fine but everything sort of has to stop to handle insurance claims and now, the hunt is on for a truck that he will like as much as the one that is crumpled up over in Hoover.

Another reason I haven't updated in a while is because I started training for another marathon. The Mercedes Marathon is here in Birmingham in February. I thought since I've already done one marathon that this training would come easier....But no...it is still hard. We have weekly miles we have to get in and then a long run on Sunday morning. Tomorrow morning I'll get up at around 5:30 a.m., meet the team an hour later to run 9 miles. It won't be fun to even think about until I'm in the car on my way home after I'm finished! I just keep remembering that I am doing this for the Leukemia & Lymphoma Society...and I remember Janie and all the children who died because of leukemia. And I remember all the kids who are living today after they were successfully treated. Those kids are going to have a future, finish school, get married....they will live a life because cures were sought after and treatments were made available.

And the most personal reason I haven't updated....Well, sometimes it is just too hard. When I update, I have to face my feelings, I have to organize my thoughts, I have to remember why this website even exists. Sometimes I want to hide away. I just want to "not" think. But today, someone who doesn't know me asked me how many children I have. I told her 5. I didn't explain. I left it at that. In my heart I wanted to break down. I wanted to. But I didn't. I walked off and let my mind think of my third child....Sweet Janie...Forever 5 years old.....I think of her Snow White costume she wore her last Halloween....I think of her smile...I think of her laughter....And I think I am the luckiest mother....I got to hold an angel in my arms....I got 5 years with this precious little girl that God picked out just for me. My life will never be the same.

Forever Missing Janie,
Janet

Sunday, September 19, 2004 7:19 PM CDT

CONGRATULATIONS to Miss Alabama, Deidre Downs, who is now MISS AMERICA !!

www.missamerica.com

For those of you who don't know the story, Deidre started the Curing Childhood Cancer Car tags for the state of Alabama. We were blessed enough to work with her this last year and I was amazed at how hard she worked to get this tag passed. Not only did this state get the 1,000 tags pre-sold by the July 31 deadline...we more than doubled that number! Money raised for this specialty tag will go to pediatric cancer research right here in Alabama. Thank you Deidre, for designing this tag and showing how much you care about the children who are suffering from cancer.

And again...Congratulations to Deidre! We are so proud of you!


Until later,
Forever Missing Janie,
Janet

Friday, September 17, 2004 7:57 PM CDT

Just wanted to update to tell you we made it through Hurricane Ivan! We were very lucky and we only lost our power for about 24 hours.

Until later...
Forever Missing Janie,
Janet

Saturday, September 11, 2004 9:41 AM CDT

September 11....I know what most people think of when they hear this date. But for me, it is not about any of that.

September 11, 2002 is the date that Janie relapsed. Just a mere 11 months into her 2 1/2 year protocol that was going to save her life...

I knew before I took her in that morning that the cancer was back. There were too many signs that were haunting me....the night sweats...bruising...fever...fatigue...

To anyone else these are just mild little annoying symptoms. To a mom of a child with leukemia, they are red flags....big, heavy, dark red flags. To a mom with a child of leukemia, it means the nightmare had begun again and it is more scary than the original diagnosis. To a mom with a child with leukemia, it means you can't pretend anymore that everything is going to be all right...

September 11, 2002 will forever be that defining moment for me. We began spiraling downward and downward until the crash on January 4th, 2003.

I don't think in my lifetime I will ever meet anyone more brave, more inspirational than my daughter Janie. She never asked "why me?". She never stopped trying. She was always obedient...to her parents and to her Lord.

She achieved in her lifetime what I may never achieve in 100 years...She was a light in this world...a Hero...a beautiful example of what God wants us to be...Pure, Innocent, Sweet, and full of Love.

I wish there would never be another September 11...

Forever Missing Janie,
Janet

Monday, August 30, 2004 9:06 AM CDT

Hey everyone,

All the kids are back in school….Haley is in 4th, Anna is in 3rd, and Daniel & David are in 1st. They love being back with all their friends and they just love going to school everyday. Both Haley and Anna are cheerleaders – Haley cheers her first game this Tuesday and Anna cheers her first game on Thursday. The boys will start soccer practice tonight. It is going to be a busy week!

So what am I doing with all my time now that the kids are back in school??? Well, besides reorganizing the whole house, catching up on things I’ve ignored all summer, etc, etc…I started running again. (I had pretty much taken the whole summer off from any walking or running.)

Okay, I did more than just start running again….I actually signed up to run another marathon for the Leukemia & Lymphoma Society!?! I know, I know…I barely made it through the Marine Corps Marathon in October and here I am ready to bring it on again!! Anyway, I’m going to attempt the Mercedes Marathon here in Birmingham in February. I know that is a long way off, but trust me, it is going to take that long to get my legs back into shape.

Right now I’m running just a few miles each day and trying to ease myself back in the rhythm. But the other day when I was running I was already so discouraged. The air was so thick and muggy (imagine that in Alabama in August!:) . I was really dragging….What was I thinking signing up with Team in Training again??? I was really wondering if I should just try to get out of it. I have so many things going on now….helping the kids with homework, getting them to all their games (everyone at different fields-different times-different cities), volunteer work, keeping the house in order, working for Dan….I have a million reasons why I can’t handle training for another marathon.

That morning after the run, I came home and before I showered, I decided to check my email and voice mail. My heart sank….I had message after message after message from different friends- another child in our community had been diagnosed with leukemia. And just a few weeks ago another child in our town had been diagnosed with a brain tumor.

I was numb…and sad. I got in the shower and just cried and cried. I know what these families are going through. I know their hurt, pain, fears…It tears me up thinking about what happens when you hear your child has cancer. It is so terribly hard. There is no way to explain it.

Me running another marathon is nothing compared to their pain. I hope one day that cancer is a distant, ugly memory…I hope one day that no one has to run another marathon for the Leukemia & Lymphoma Society. I hope that day comes very, very soon.

Forever Missing Janie,
Janet

Monday, August 16, 2004 2:14 PM CDT

Hello everyone.

It's been a while since I updated. We are busy trying to get the kids back in school. They met their teachers today and will officially start tomorrow. With the exception of buying 12 more pencils and one more pair of shoes...we are READY!

Will update more soon.

Forever Missing Janie,
Janet

Sunday, August 1, 2004 7:47 AM CDT

YEAH! It is unofficial....but according to our count....we made the goal of 1,000 Curing Childhood Cancer Car Tags for the State of Alabama!!!! We should know pretty soon the official count from the state.

Many, many people helped in this effort and we are so excited that soon we will have this tag on our cars and money in the researchers hands to find cures for pediatric cancer!

More details as we get them....

Again, THANKS ALABAMA!

Forever Missing Janie,
Janet

Friday, July 23, 2004 2:00 PM CDT

Hey everyone...

We will try to update soon. We will be working up to the last minute this month on our goal of getting our 1,000 pre-sold Curing Childhood Cancer Car Tags for Alabama! As soon as we know our numbers we will let you know. If you are in Alabama and haven't gotten your tag yet, GO NOW!

For more info, go to:
www.curingchildhoodcancer.org

Until later....

Forever Missing Janie,
Janet

Sunday, July 4, 2004 12:33 AM CDT

Today my twin boys are 6 years old. When they were born over 2 months early back in 1998, they weighed just under 4 pounds each. David stayed in the hospital for a month and Daniel stayed in for 6 weeks. They were scrawny and weak. We brought them home where they slept in the same crib and they got to know their older sisters. At that time Haley was only 3 1/2 years old, Anna was 2 1/2 years old and Janie was 1 1/2 years old. Can you imagine how crazy our home life was?? Five children....and the oldest wasn't even 4 years old. What an amazing life God had in mind for us all.

Here we are just a few years later, Haley is now 9 1/2, Anna is 8 1/2, the boys are 6....big and strong....and healthy. And Janie never got to be 6 years old here on earth. I can't tell you how sad, how strange, that the twins are older than Janie. How can that be?? How can I stop thinking that and just enjoy the twins birthday?? How can I fill the emptiness....the empty chair at the table, the empty chair in the car....the empty little bed...How can I be the mom I need to be when I feel so sad and so tired and so old??? And I don't even have time to think about it all....I have a cake to decorate and gifts to wrap and a birthday song to sing....

Forever missing Janie,
Janet

Sunday, June 20, 2004 7:34 AM CDT

You’ve heard the saying “ I love him more today than the day I married him…” Well, if I’d heard that 15 or so years ago, I would have cynically said “Yeah…Right…”
But, I finally understand that phrase.

It’s not that I like everything about him…as a matter of fact there are probably less things I “like” about him today. All the little things he did when we were dating I found endearing and cute…well, now those same things can be infuriating and nail-scratching–chalkboard irritating. But I “love” him more. Because before we had children, I didn’t really know him. Or his heart. He says he would die for his children…and he would. He says he would sacrifice everything… and he has.

I see him crawl out of his pain to go to Children’s Hospital if they need him. I see a very private person who has now been interviewed on every local TV station as he makes the public aware of Curing Childhood Cancer car tags benefiting pediatric cancer research. I see him everyday check Caringbridge pages of other children and leave messages of encouragement to the parents. I see his pain when another child loses the battle against their cancer. I see him plant flowers on his daughter’s grave and I see him drag himself to work when he is tired and broken. But he never gives up…he never lets his pain stop him from being the best dad he can be.

Today we will celebrate Father’s day. We won’t do anything extravagant. That just isn’t his style. He’ll probably go to church, go to the cemetery, eat lunch, and then swim with the children the rest of the day. I’ll probably watch from the sidelines, knowing how much he loves being with the kids, knowing how much he is hurting deep inside for his little girl Janie, knowing how much hell he has been through these last few years but always keeping a positive attitude… and I’ll say under my breath…”Wow…. I love him more today than the day I married him…”

Happy Father's Day Dan....We love you.

Forever Missing Janie,
Janet

Thursday, June 17, 2004 7:49 AM CDT

Hey everyone,

We just want to take this opportunity to say CONGRATULATIONS TO DEIDRE DOWNS!!! Deidre was crowned Miss Alabama last weekend and will now prepare for the Miss America competition. You can go to the Miss Alabama website for more information on Deidre's special night.

Deidre is close to our hearts because she is the one who began the "Curing Childhood Cancer" car tag efforts in Alabama. She came up with the idea of these specialty car tags long ago and when these tags go into production they will raise thousands of dollars every year for pediatric cancer research at Children's Hospital. If you haven't pre-purchased your tag yet, go to this website to do it NOW: www.curingchildhoodcancer.org

Again, congrats to Deidre, we are so proud of you!

Forever missing Janie,
Janet

Sunday, June 6, 2004 8:53 PM CDT

Hey everyone, Just wanted to let you know one of our little CB friends from Alabama is in the hospital. Molly got a fever on Friday and was admitted. I'm sure Molly and her family could use some extra prayers.

You can visit her CB page at: www.caringbridge.org/al/mollydianne

Forever Missing Janie,
Janet

Wednesday, May 26, 2004 8:46 AM CDT

Center Fest 2004 is over and it was GREAT!!

We started with a one mile fun run “Jogging for Janie.” My twin boys ran on without me and my daughters and I walked with one of the clowns. We were the official last place runners! I loved it! Finally a race I could enjoy!

We spent the rest of the day jumping on all the inflatable rides, getting tattooes, ice cream, Hummer limo rides, etc, etc. At the end of the day, the kids were exhausted from having so much fun.

Dan and I want to thank all the many sponsors and volunteers that helped put on a great event at Center Fest. Everyone involved worked so hard and we just can’t tell them enough how much we appreciate it. We especially want to thank the American Red Cross. They were so supportive and helpful that I can’t imagine doing this without them. We also want to thank them for their continued help in the fight against childhood cancer. The blood products that they collect on a daily basis helps these children survive while we all fight for a cure.

While at Center Fest, many people signed up for their Curing Childhood Cancer car tag. Thank you so much! We want to encourage everyone to continue getting the word out about the tags. We only have until July 31 to get a bunch more. Please visit the site at www.curingchildhoodcancer.org
Remember that the proceeds for this tag go directly to pediatric cancer research here in Alabama.


Forever Missing Janie,
Janet

Monday, May 17, 2004 8:10 AM CDT

Center Fest !!!

Center Fest will be May 21 & 22 at the Vestavia Hills City Center (Hwy 31, the shopping center with the Rave theater, Publix, etc). On Saturday, May 22nd, there will be the Center Fest fun run, "Jogging For Janie". It's only one mile and you can walk it or run it. All ages are welcome.

Registration is $10 donation for kids and $20 donation for adults...You get a free T-shirt and you have the chance to win some prizes too! The money raised for the fun run will go to the Curing Childhood Cancer Car tag efforts.

Registration for the fun run will be 9am May 22nd at the Rave. The finish line will be at the Publix parking lot where there will be a giant slide, obstacle course, moonwalk and much more. Also, there will be "HUMMER" limo rides balloons, clowns, magicians, refreshments etc,. Red Cross will be there for a blood drive. Also, there will be food tickets sold to sample Vestavia City Center restaurants and a portion of that money raised will also go to help with the car tag efforts.

For a complete schedule of events planned for the entire weekend, go to: www.vestaviacenterfest.com

For complete information on the Curing Childhood Cancer car tags, go to: www.curingchildhoodcancer.org

Please let all your friends know about Center Fest! We will see you there.

Forever Missing Janie,
Janet

Sunday, May 9, 2004 6:14 PM CDT

COMING SOON: News on an exciting upcoming event "CenterFest" May 21 & 22 at the Vestavia Hills City Center that will help with the Curing Childhood Cancer Car Tag effort for Alabama.


Sunday, May 9, 2004
Happy Mothers Day

Today I wore two ceramic heart necklaces that my twin boys made for me. I got poems from Haley and Anna, some flowers, a lunch at Cracker Barrel and a new necklace for 5 little charms. A great day…that was almost complete…

I had my first baby, Haley, when I was 30 years old. I remember that after I had her that I finally looked forward to Mothers Day. That holiday was something that for years I had ignored. It was too painful. When I was 15 years old, my mother died. That was in 1980. Then year after year I had to pretend that Mother’s Day was just another day on the calendar. I just smiled and would say nothing when people would innocently say “ Did you get your mother a mother’s day gift yet?” …or I’d flip the channel at every commercial telling us what to get our mom for her special day.

For years I just ignored the whole Mother’s Day gig.

Then, what a blessing. I had my own children. I was a Mom! I could finally smile when I woke up on that Sunday morning in May. I loved the macaroni jewelry, the breakfast in bed, the uncontrollable giggles as they try to keep secret any other gifts. What a special day with my husband and all our wild, loud, giggly children.

Then, Janie died.

Mother’s Day now holds pain again for me. Oh sure, I can keep the smiles going for a few minutes at a time. But this is a day where my children should be with me. All my children. I don’t care if I’d had 50 children, if one were missing, I’d be incomplete. And without Janie, my day is incomplete.

I love Haley and Anna and Daniel and David. Each….Individually…And they make me happy. But I am missing my other daughter. I long to hold her and hear her voice.

And, I miss my mother. She and I missed out on so much. With each milestone, joy, pain, or any event, I wonder what it would have been like to have my mother beside me. I’ll never know.

I will gather strength today from the children here that I can hold….and I will gather strength from knowing that my mother and my daughter are together in Paradise. Mother’s Day will never quite be the same again for me. It will always be filled with pain and happiness, intertwined together….always reminding me of my joy here on earth and the joy to come when we are reunited together in Heaven.

Forever Missing Janie,
Janet

Tuesday, May 4, 2004 10:37 AM CDT

Our prayers go out to Rachel Green's family. As Dan and I travel the road just a few steps ahead, we know her family has begun a very painful path. Please offer your prayers for them because through many prayers, the Lord will surround this family and give them the strength to get through each difficult moment.

Forever Missing Janie,
Janet and Dan Sims

www.weloverachel.com

----------------------------
Sunday, April 18, 2004

What on earth is wrong with me??

What would possess me to do this??

Those two questions kept popping into my head one morning after I had been on a running trail in Mountain Brook, AL for about 20 minutes.

After getting up at 6 a.m., getting the kids to school and after Dan had left for work...I had the whole day to myself. I drank one cup of coffee, had a little breakfast, put on my running shoes and running clothes and headed for a 6.2 mile run not far from home.

Just minutes into my run, it started to sprinkle. No problem. It’ll stop soon, I said to myself. I kept going.

Three miles into the run, it was a down pour. I had 3.2 miles to go to get back to my car. I seriously thought about calling my husband, crying hysterically on the phone and begging him to pick me up. But I didn’t.

I could have been sitting at home drinking a nice warm cup of coffee, watching Regis and Kelly, feet propped up on the coffee table. I could be taking a nice long warm shower. I could be taking a nap or spring cleaning, or talking on the phone…or ANYTHING ELSE in the whole world besides sloshing through the rain puddles and getting my brand new $200 running shoes soaking wet (...Just kidding Dan...the shoes weren’t that much:)

But there I was, running the hills in the rain. Not a pretty sight, I’m sure. I see the headlines now: “Overweight, Overaged, Jiggly Mom Rescued From Raging Mud Puddle.”

So I go back to my two questions I posed at the beginning:
What on earth is wrong with me??
And
What on earth would possess me to do this??

Well, what is wrong with me??
Answer: Absolutely nothing. I’m a reasonably healthy, middle-aged, stay-at-home mom.

So, what on earth would possess me to do this??
Answer: I have to stay in shape for my next marathon or half marathon to benefit the Leukemia & Lymphoma Society. I don’t know when that will be, or where that will be, but when it happens, I’ll be ready.

I don’t have to look far to be reminded why I need to fundraise for the Leukemia & Lymphoma Society again. You see, there is a 16 year old girl in the ICU (Children’s Hospital-in B’ham) with relapsed AML. There is a little girl in Mountain Brook who is on treatment for A.L.L. There are several children in this area who are in remission and need to stay in remission.

And then there is Janie. My little girl. My sweet little girl. She fought her leukemia but it was relentless, aggressive, painful. I can do nothing less than fight back just as relentless, aggressive, painful…as I run through the rainy trails. I am possessed with the need to help get rid of leukemia. And as I keep hearing, “Researchers can’t do marathons and Marathoners can’t do research.”

I know it has been a long time since I’ve talked about running. I bet some of you thought I hung up the old stinky running shoes the minute I got back from DC six months ago. Well, to tell you the truth, I did hang them up for a month until my legs healed. I immediately gained at least 15 pounds….I foolishly continued eating like I was still running 30-40 miles a week….FYI, not a good idea.

Then, slowly I began running again. Next weekend I will go back to Nashville for the Country Music Half Marathon. This is not a Leukemia Society event for me so I didn’t fundraise for this one. The purpose of this half marathon is to keep me in shape and motivated so when I feel God leading me to another marathon, I’ll be better prepared this time.

Enough about MY running...Guess who ran this past weekend?? My children! Our community had a one mile run (Dogwood Dash) and everyone except Daniel ran. Actually, I had only signed up Haley (9 yrs old) and Anna (8years old). After they were in line and had their numbers pinned on, very quietly David tugged at my shirt. I leaned down as he whispered in my ear... “Mommy…Can I run too?”

I grabbed another five dollar bill out of my pocket, ran to the sign up table, scribbled “David Sims, 5 years old” on a piece of paper...and off we ran to the starting line as I pinned on his running number.

The race started and over 100 kids took off in the same direction taken during the Jog for Janie so long ago. I watched Haley, Anna, and David (and some supervising parents) as they ran with all their might. I watched until their little bodies were too far away for me to see.

Then I stood anxiously at the finish line. I hope they are okay…I hope they can keep up…I hope they are having a BLAST!

Daniel and I held up one end of the flags with several other people as we formed the finish line. Soon we saw the runners coming in. I seached the crowd looking for my children to cross the finish line. Then, coming around the corner I saw three little girls running as fast as they could. They were holding hands...They were Haley, Anna, and their cousin Leah. We were clapping and screaming. They flew by me and Daniel to go get their medals.

I gave them a quick hug and then turned my attention back to the race...Where was David??

Runner after runner passed by, but no David. A friend took one look at my frantic face and ran back in the race to find him.

And with the theme to “Rocky” playing loudly in my head...here came David rounding the street corner and heading straight for the finish line! His face was red, his hair slicked down with sweat…and his determination was on fire. He ran through the flags, gave his mom a high five… and he finished his first race. I was so proud.

Haley, Anna, and Leah’s time was a few seconds after 10 minutes. David was 11 minutes and several seconds. (All better times than I’ve ever done!)

Was I proud because they ran?? Or proud because they finished?? Or proud because they had pretty good finish times?? Well, yes-yes-yes. But I think more than proud, I’m thankful…Thankful that they are healthy and can run and play and be free. So many children cannot do the simplist thing like run a one mile race. So many children have a much more basic race…a race to beat their cancer and to stay alive. I will never forget those children. Or their parents. The race is hard, long, grueling, and run with the intention of winning.

In December, 2002, our community had a fundraiser for Janie – Jogging for Janie. Janie had relapsed 3 months prior to this event. She was struggling. But that morning, she said in her soft voice, “Mommy, I think I’m going to run in Jogging for Janie!”. I was surprised because I knew how terribly sick she was, but if she felt like it, I would help her.

But as the morning went along, she began to tire. She later said “Mommy, will they let me ride my bike in Jogging for Janie instead?” Sure, I told her.

Then, a few hours later, as the cancer began causing brutal bone pain...she barely could whisper.. “Mommy, can I ride in the stroller for Jogging for Janie?”

Dan held her as the Jog for Janie started without her. She was too cold, too much in pain. We tried to walk a little way up the street so she would feel like she had done it. But we turned around and came back.

Janie ran the race that leukemia made her run. She gritted her teeth and ran through all the rough times, mile after mile after painful mile. She showed courage, strength, determination, and was gracious throughout.

After running for 15 long months, my little Janie got to run through that finish line. And I’m sure our Lord was there to greet her, look into her beautiful brown eyes, and say “Well done, Janie...Well done...”

Forever missing Janie,
Janet Sims
P.S. Pictures from Jog for Janie are posted on the photo page, including a picture of David, who is Janie's little brother and also her perfect matched bone marrow donor.

Sunday, April 18, 2004 10:58 PM CDT

What on earth is wrong with me??

What would possess me to do this??

Those two questions kept popping into my head one morning after I had been on a running trail in Mountain Brook, AL for about 20 minutes.

After getting up at 6 a.m., getting the kids to school and after Dan had left for work...I had the whole day to myself. I drank one cup of coffee, had a little breakfast, put on my running shoes and running clothes and headed for a 6.2 mile run not far from home.

Just minutes into my run, it started to sprinkle. No problem. It’ll stop soon, I said to myself. I kept going.

Three miles into the run, it was a down pour. I had 3.2 miles to go to get back to my car. I seriously thought about calling my husband, crying hysterically on the phone and begging him to pick me up. But I didn’t.

I could have been sitting at home drinking a nice warm cup of coffee, watching Regis and Kelly, feet propped up on the coffee table. I could be taking a nice long warm shower. I could be taking a nap or spring cleaning, or talking on the phone…or ANYTHING ELSE in the whole world besides sloshing through the rain puddles and getting my brand new $200 running shoes soaking wet (...Just kidding Dan...the shoes weren’t that much:)

But there I was, running the hills in the rain. Not a pretty sight, I’m sure. I see the headlines now: “Overweight, Overaged, Jiggly Mom Rescued From Raging Mud Puddle.”

So I go back to my two questions I posed at the beginning:
What on earth is wrong with me??
And
What on earth would possess me to do this??

Well, what is wrong with me??
Answer: Absolutely nothing. I’m a reasonably healthy, middle-aged, stay-at-home mom.

So, what on earth would possess me to do this??
Answer: I have to stay in shape for my next marathon or half marathon to benefit the Leukemia & Lymphoma Society. I don’t know when that will be, or where that will be, but when it happens, I’ll be ready.

I don’t have to look far to be reminded why I need to fundraise for the Leukemia & Lymphoma Society again. You see, there is a 16 year old girl in the ICU (Children’s Hospital-in B’ham) with relapsed AML. There is a little girl in Mountain Brook who is on treatment for A.L.L. There are several children in this area who are in remission and need to stay in remission.

And then there is Janie. My little girl. My sweet little girl. She fought her leukemia but it was relentless, aggressive, painful. I can do nothing less than fight back just as relentless, aggressive, painful…as I run through the rainy trails. I am possessed with the need to help get rid of leukemia. And as I keep hearing, “Researchers can’t do marathons and Marathoners can’t do research.”

I know it has been a long time since I’ve talked about running. I bet some of you thought I hung up the old stinky running shoes the minute I got back from DC six months ago. Well, to tell you the truth, I did hang them up for a month until my legs healed. I immediately gained at least 15 pounds….I foolishly continued eating like I was still running 30-40 miles a week….FYI, not a good idea.

Then, slowly I began running again. Next weekend I will go back to Nashville for the Country Music Half Marathon. This is not a Leukemia Society event for me so I didn’t fundraise for this one. The purpose of this half marathon is to keep me in shape and motivated so when I feel God leading me to another marathon, I’ll be better prepared this time.

Enough about MY running...Guess who ran this past weekend?? My children! Our community had a one mile run (Dogwood Dash) and everyone except Daniel ran. Actually, I had only signed up Haley (9 yrs old) and Anna (8years old). After they were in line and had their numbers pinned on, very quietly David tugged at my shirt. I leaned down as he whispered in my ear... “Mommy…Can I run too?”

I grabbed another five dollar bill out of my pocket, ran to the sign up table, scribbled “David Sims, 5 years old” on a piece of paper...and off we ran to the starting line as I pinned on his running number.

The race started and over 100 kids took off in the same direction taken during the Jog for Janie so long ago. I watched Haley, Anna, and David (and some supervising parents) as they ran with all their might. I watched until their little bodies were too far away for me to see.

Then I stood anxiously at the finish line. I hope they are okay…I hope they can keep up…I hope they are having a BLAST!

Daniel and I held up one end of the flags with several other people as we formed the finish line. Soon we saw the runners coming in. I seached the crowd looking for my children to cross the finish line. Then, coming around the corner I saw three little girls running as fast as they could. They were holding hands...They were Haley, Anna, and their cousin Leah. We were clapping and screaming. They flew by me and Daniel to go get their medals.

I gave them a quick hug and then turned my attention back to the race...Where was David??

Runner after runner passed by, but no David. A friend took one look at my frantic face and ran back in the race to find him.

And with the theme to “Rocky” playing loudly in my head...here came David rounding the street corner and heading straight for the finish line! His face was red, his hair slicked down with sweat…and his determination was on fire. He ran through the flags, gave his mom a high five… and he finished his first race. I was so proud.

Haley, Anna, and Leah’s time was a few seconds after 10 minutes. David was 11 minutes and several seconds. (All better times than I’ve ever done!)

Was I proud because they ran?? Or proud because they finished?? Or proud because they had pretty good finish times?? Well, yes-yes-yes. But I think more than proud, I’m thankful…Thankful that they are healthy and can run and play and be free. So many children cannot do the simplist thing like run a one mile race. So many children have a much more basic race…a race to beat their cancer and to stay alive. I will never forget those children. Or their parents. The race is hard, long, grueling, and run with the intention of winning.

In December, 2002, our community had a fundraiser for Janie – Jogging for Janie. Janie had relapsed 3 months prior to this event. She was struggling. But that morning, she said in her soft voice, “Mommy, I think I’m going to run in Jogging for Janie!”. I was surprised because I knew how terribly sick she was, but if she felt like it, I would help her.

But as the morning went along, she began to tire. She later said “Mommy, will they let me ride my bike in Jogging for Janie instead?” Sure, I told her.

Then, a few hours later, as the cancer began causing brutal bone pain...she barely could whisper.. “Mommy, can I ride in the stroller for Jogging for Janie?”

Dan held her as the Jog for Janie started without her. She was too cold, too much in pain. We tried to walk a little way up the street so she would feel like she had done it. But we turned around and came back.

Janie ran the race that leukemia made her run. She gritted her teeth and ran through all the rough times, mile after mile after painful mile. She showed courage, strength, determination, and was gracious throughout.

After running for 15 long months, my little Janie got to run through that finish line. And I’m sure our Lord was there to greet her, look into her beautiful brown eyes, and say “Well done, Janie...Well done...”

Forever missing Janie,
Janet Sims
P.S. Pictures from Jog for Janie are posted on the photo page, including a picture of David, who is Janie's little brother and also her perfect matched bone marrow donor.

Sunday, April 18, 2004 10:58 PM CDT

What on earth is wrong with me??

What would possess me to do this??

Those two questions kept popping into my head one morning after I had been on a running trail in Mountain Brook, AL for about 20 minutes.

After getting up at 6 a.m., getting the kids to school and after Dan had left for work...I had the whole day to myself. I drank one cup of coffee, had a little breakfast, put on my running shoes and running clothes and headed for a 6.2 mile run not far from home.

Just minutes into my run, it started to sprinkle. No problem. It’ll stop soon, I said to myself. I kept going.

Three miles into the run, it was a down pour. I had 3.2 miles to go to get back to my car. I seriously thought about calling my husband, crying hysterically on the phone and begging him to pick me up. But I didn’t.

I could have been sitting at home drinking a nice warm cup of coffee, watching Regis and Kelly, feet propped up on the coffee table. I could be taking a nice long warm shower. I could be taking a nap or spring cleaning, or talking on the phone…or ANYTHING ELSE in the whole world besides sloshing through the rain puddles and getting my brand new $200 running shoes soaking wet (...Just kidding Dan...the shoes weren’t that much:)

But there I was, running the hills in the rain. Not a pretty sight, I’m sure. I see the headlines now: “Overweight, Overaged, Jiggly Mom Rescued From Raging Mud Puddle.”

So I go back to my two questions I posed at the beginning:
What on earth is wrong with me??
And
What on earth would possess me to do this??

Well, what is wrong with me??
Answer: Absolutely nothing. I’m a reasonably healthy, middle-aged, stay-at-home mom.

So, what on earth would possess me to do this??
Answer: I have to stay in shape for my next marathon or half marathon to benefit the Leukemia & Lymphoma Society. I don’t know when that will be, or where that will be, but when it happens, I’ll be ready.

I don’t have to look far to be reminded why I need to fundraise for the Leukemia & Lymphoma Society again. You see, there is a 16 year old girl in the ICU (Children’s Hospital-in B’ham) with relapsed AML. There is a little girl in Mountain Brook who is on treatment for A.L.L. There are several children in this area who are in remission and need to stay in remission.

And then there is Janie. My little girl. My sweet little girl. She fought her leukemia but it was relentless, aggressive, painful. I can do nothing less than fight back just as relentless, aggressive, painful…as I run through the rainy trails. I am possessed with the need to help get rid of leukemia. And as I keep hearing, “Researchers can’t do marathons and Marathoners can’t do research.”

I know it has been a long time since I’ve talked about running. I bet some of you thought I hung up the old stinky running shoes the minute I got back from DC six months ago. Well, to tell you the truth, I did hang them up for a month until my legs healed. I immediately gained at least 15 pounds….I foolishly continued eating like I was still running 30-40 miles a week….FYI, not a good idea.

Then, slowly I began running again. Next weekend I will go back to Nashville for the Country Music Half Marathon. This is not a Leukemia Society event for me so I didn’t fundraise for this one. The purpose of this half marathon is to keep me in shape and motivated so when I feel God leading me to another marathon, I’ll be better prepared this time.

Enough about MY running...Guess who ran this past weekend?? My children! Our community had a one mile run (Dogwood Dash) and everyone except Daniel ran. Actually, I had only signed up Haley (9 yrs old) and Anna (8years old). After they were in line and had their numbers pinned on, very quietly David tugged at my shirt. I leaned down as he whispered in my ear... “Mommy…Can I run too?”

I grabbed another five dollar bill out of my pocket, ran to the sign up table, scribbled “David Sims, 5 years old” on a piece of paper...and off we ran to the starting line as I pinned on his running number.

The race started and over 100 kids took off in the same direction taken during the Jog for Janie so long ago. I watched Haley, Anna, and David (and some supervising parents) as they ran with all their might. I watched until their little bodies were too far away for me to see.

Then I stood anxiously at the finish line. I hope they are okay…I hope they can keep up…I hope they are having a BLAST!

Daniel and I held up one end of the flags with several other people as we formed the finish line. Soon we saw the runners coming in. I seached the crowd looking for my children to cross the finish line. Then, coming around the corner I saw three little girls running as fast as they could. They were holding hands...They were Haley, Anna, and their cousin Leah. We were clapping and screaming. They flew by me and Daniel to go get their medals.

I gave them a quick hug and then turned my attention back to the race...Where was David??

Runner after runner passed by, but no David. A friend took one look at my frantic face and ran back in the race to find him.

And with the theme to “Rocky” playing loudly in my head...here came David rounding the street corner and heading straight for the finish line! His face was red, his hair slicked down with sweat…and his determination was on fire. He ran through the flags, gave his mom a high five… and he finished his first race. I was so proud.

Haley, Anna, and Leah’s time was a few seconds after 10 minutes. David was 11 minutes and several seconds. (All better times than I’ve ever done!)

Was I proud because they ran?? Or proud because they finished?? Or proud because they had pretty good finish times?? Well, yes-yes-yes. But I think more than proud, I’m thankful…Thankful that they are healthy and can run and play and be free. So many children cannot do the simplist thing like run a one mile race. So many children have a much more basic race…a race to beat their cancer and to stay alive. I will never forget those children. Or their parents. The race is hard, long, grueling, and run with the intention of winning.

In December, 2002, our community had a fundraiser for Janie – Jogging for Janie. Janie had relapsed 3 months prior to this event. She was struggling. But that morning, she said in her soft voice, “Mommy, I think I’m going to run in Jogging for Janie!”. I was surprised because I knew how terribly sick she was, but if she felt like it, I would help her.

But as the morning went along, she began to tire. She later said “Mommy, will they let me ride my bike in Jogging for Janie instead?” Sure, I told her.

Then, a few hours later, as the cancer began causing brutal bone pain...she barely could whisper.. “Mommy, can I ride in the stroller for Jogging for Janie?”

Dan held her as the Jog for Janie started without her. She was too cold, too much in pain. We tried to walk a little way up the street so she would feel like she had done it. But we turned around and came back.

Janie ran the race that leukemia made her run. She gritted her teeth and ran through all the rough times, mile after mile after painful mile. She showed courage, strength, determination, and was gracious throughout.

After running for 15 long months, my little Janie got to run through that finish line. And I’m sure our Lord was there to greet her, look into her beautiful brown eyes, and say “Well done, Janie...Well done...”

Forever missing Janie,
Janet Sims
P.S. Pictures from Jog for Janie are posted on the photo page, including a picture of David, who is Janie's little brother and also her perfect matched bone marrow donor.

Sunday, April 11, 2004 3:41 PM CDT

Wishing you all a Happy Easter...

Forever Missing Janie,
The Sims Family....Dan,Janet,Haley,Anna,Daniel,David and Angel Janie

Sunday, March 21, 2004 9:07 PM CST

My journal entry for Janie's birthday on March 19th...

March 19, 2004
Janie’s Birthday.

7 years ago I was curled up under some blankets by myself. I heard Dan and Haley and Anna downstairs having some breakfast together. I closed my eyes and then I felt a big kick inside my huge belly. It was time....Janie was coming...3 weeks early, but coming anyway.

7 years ago. I just can’t believe it. Lately, when I think of Janie, I don’t think of her as a 5 year old dying in the hospital. I think of her as a baby. Or a toddler. I think of her with a wide open smile and only 2 bottom teeth. I think of her twirling a pacifier round and round in her mouth. I remember going through the house trying to find her...I’d say “Jaaannnieeee!” She’d yell back “WHUP?” (translation: “WHAT??”)

Lately I think of her learning to walk, tripping over anything in her way, jumping up and going again.

It’s so much easier right now to think of her that way. Back when there was no cancer, no pain, no port, no chemo, no fear, no death.

With each of my five children, I started a diary for them when they were born. I did this because their baby book seemed so factual...First tooth, First solid food, First photo. It was so sterile and confining. So I bought each a little book I could write my feelings and their feelings. It was for everything that didn’t fit into the lines of a store bought book. And I would save it for when they grew up. Then they could read not just facts, but they could read my love. I thought that if anything ever happened to me, they would have these diaries to fill in all the unanswered questions, and they would know how much they were loved and cared for.

It never entered my mind that one of my children would not get the chance to grow up and read these diaries.

Janie’s diary...well, it will stay with me. And there are no more entries to write.

These are my first 2 entries in Janie’s diary:
-------------------------------------------------
March 19, 1997

To our sweet little girl-
Surprise! You got here early! What a blessing! You are so beautiful and sweet.

You are not even a day old and you have surprised me so many times. First, I was shocked to find out I was expecting you and now, you surprised me by coming early! (Your due date was April 13.) But we feel so blessed to have you in our lives.

I want you to know we are happy and thrilled to be sharing our life with you. And I want you to know you were part of our family plan...just a little sooner than we thought. Already I can’t imagine life before you.

Jane Ellen Sims- I promise to cherish each day I am privileged to spend with you.

I love you,
Your Mother

March 21, 1997

It is 4 a.m. – still in the hospital. At midnight the nurse took you to the nursery to let me sleep a couple of hours. I just woke up, realized you weren’t with me, and walked down the hall to go get you. I couldn’t wait in the room to have them bring you here. I wanted you immediately!

The nursery was full-18 babies! As a matter of fact, our next door neighbors, the Watkins, had a baby on the 20th and they had their boy David in there too! He was due almost 2 weeks ago but wasn’t in as much of a hurry to be here like you!

You and I are in my room now. You are still sleeping peacefully in the bassinet. What a special moment this is for you and me. Today we will be met by your Dad and 2 sisters to go home and start our new life together. But tonight it is just you and me.

Jane, as I look at you my heart fills with love – the tears are running from my eyes-joyful tears. I love you so very, very much. Love, Mommy
_____________________________________

The next entries tell the good days and the bad days and how we started our life together. There’s even one entry that was simple as her handprint in blue paint. Another entry was in her handwriting, she wrote her name. Back then, we called her Jane or Jane Ellen. I don’t remember when we finally started calling her Janie.

So here I am again, just like last year... A little girl’s birthday and no little girl. I don’t know what to do.

I think of one scripture: Job 6:2 If only my anguish could be weighed and all my misery be placed on the scales..it would surely outweigh the sand of the seas.

I want to stay in that scripture...I want to wallow in grief and regret and pity and hell. But I can’t...because that would ignore God’s love and his perfect plan. So in my mind I try to remember another scripture: Psalm 118:24
“This is the day which the LORD hath made; we will rejoice and be glad in it.”


So, on Friday, I took Haley, Anna, Daniel and David to the store to get balloons. We drove to the cemetery and met Dan. We wrote on the balloons our love letters to Janie. And we stood at sunset and released the balloons. The children yelled to their sister... “Happy Birthday Janie! We love you!” I stood and watched the balloons fly through the Birmingham sky until they were gone.

Then I gathered together the broken pieces of my heart, I mushed it all back together, hugged my children with all my might...and we went home...

Forever missing my Birthday girl, Janie,
Janet

Friday, March 19, 2004 8:09 AM CST

This should be Janie's 7th birthday.

I thought I could update today, but I just can't.

Happy Birthday, Janie...

Forever Missing Janie,
Janet

Monday, March 15, 2004 3:55 PM CST

****Prayer request for an Alabama teenage girl who has recently relapsed (AML). You can visit her website and offer your support: www.weloverachel.com



I've been trying to forget this week. I've been trying to stay ultra busy. I don't care what I do...I just know I don't want to hurt.

But that's a little too late, isn't it...

March 19th will be here in just a few days. Janie's birthday. She should be 7 years old. Haley is 9, Anna 8, Janie should be 7, and the boys will soon be 6.

I always loved to tell people their ages. You wouldn't believe the looks I got when their ages were 4,3,2,1,1.
I think I made a few moms gag and a few dads hyperventilate.

But I loved it. Five perfect children, close in age. Now, when someone asks about my children, I stumble. I stutter as in my mind I try to figure out how to answer such a simple question. To Dan it seems easy as he answers "5 children" then tells them about his babies. But I stall. I don't want to say 4 and deny Janie. I don't want to say 5 and have to say out loud that one of my children died. Sometimes I just can't put me or the person in front of me through it. And no matter how I answer the question, it makes me sad.

I will try to update the page on Friday, Janie's birthday. It actually is the beginning of Spring Break for us and the children will be home with me. Maybe God planned that all along so I won't be alone...I'll be busy with meals, dishes, fights, spills, whining, laughter, etc. And underneath it all, I'll be in agony for the daughter I can't pull onto my lap and say "Happy Birthday!! You're my favorite 7 year old in the whole wide world!"

Until Janie's birthday...
Forever Missing Janie,
Janet




CURING CHILDHOOD CANCER CAR TAG INFORMATION

If you live in Alabama........

The Janie Sims Children’s Foundation is helping to set up the “Curing Childhood Cancer Car Tag” for the state of Alabama.

We need your help. We need 1,000 commitments to buy a car tag before the state will actually make them. And we need to get these commitments now.

How much are they? Only $50…and most of this goes directly to cancer research at Children’s Hospital here in Birmingham. If we can get this tag in production, it has the potential to raise very substantial funds annually that are earmarked for Children’s Hospital.

Don’t wait until your tag is up for renewal. You can go now to your local tag office and tell them you want to sign up for a pre-commitment for the “Curing Childhood Cancer Tag.” This must be done right away because the state only gives you a limited time period to sign up the initial 1000 pre-commitments or this opportunity will pass us by.

We have set up a website:
www.curingchildhoodcancer.org
to answer any questions you may have about the tag or how to sign up. We also set up a phone information line at (205) 218-7452.

For people who cannot go to their local tag office, there is a power of attorney form on the website and instructions to allow a person to sign up by mail and Dan will complete the transaction at the appropriate tag office.

PLEASE TELL ALL YOUR ALABAMA FRIENDS so we can get the word out to the maximum number of people.

Forever Missing Janie,
Janet and Dan Sims

Saturday, March 6, 2004 10:24 PM CST

Time to update…

Busy, busy, busy. I can’t tell you what exactly has been so busy. Just the day to day things we become entangled with that chips away at time.

This week Haley and I hand made a Pocahontas costume for a class project. Poor Haley...she is unfortunate to have a mother who is completely inept in sewing. I have a tiny little sewing box with barely the essentials for sewing on a button...and I was expected to supervise an entire Native American costume??!! Well, we cut, pinned, both needed bandaids, laid out the scrap of material on the bed...and then sewed a few sections onto the comforter! We had a good laugh, snipped her dress back off the bed and started again.

Pocahontas was beautiful despite her mother.

Not too much with Anna last week except gymnastics, school, and getting used to the fact that her best friend is moving next month. And on Monday, one of Anna’s parents is suppose to go to Parent’s Math Night for her 2nd grade class. Well, after the whole Pocahontas dress-sewn-on-the-bed incident, I think it is best for Dan to go. (Plus, I would hate to embarrass Anna because I got kicked out of class for sneaking in a calculator:)

Daniel is doing well. He still gets up every day around 5 a.m., dresses and is ready for Kindergarten by 6a.m. ( He did not get this “up early” from me...that is definitely a Sims trait.) One day last week he was suppose to dress up like a community helper (i.e. policeman, mail carrier, etc.), so I asked him who he wanted to be. He said he wanted to be The Hulk. I give up...When I finally had the energy to explain the concept of a real community helper, he decided to be a carpenter instead.

David finally got a Power Ranger kite that he has been talking about for a few months and it was windy enough to fly it for an hour or so before we ripped it in the bushes. I was happy for even the little hour because he was just too sad looking last week when he tried to make his own kite with a piece of computer paper and few inches of yellow yarn.

Today, David went to an ice skating party for a little girl in his Kindergarten class. Dan and Daniel played in the game room until David was ready. And while they were off doing all that, Haley and Anna and I got away for a little girl time. We shopped. We ate. We went and saw my sister in action at the Culinard (Culinary School). It was a beautiful day in the South, warm – probably close to 80 degrees...daffodils all over, trees budding and blossoming. A beautiful, happy day that always makes me sad instead.

So what about me?

Sometimes I feel myself so disconnected to the world...pulling back from Dan and the children because no more feelings are left in me but just the very worst. Sometimes I am but a ghost...trapped in flesh that I want to rid myself of...flesh that keeps me here in the deepest of despair. I long to rip it off and soar away. There is no more energy left to put on my fake smile and walk around in a world that makes no sense.

But I do.

Last night, at the last minute I had a ticket to see The Passion of the Christ. I grabbed the chance to go. I was scared, excited, anxious.

I know the story. Christ was crucified and He arose again.

But as you have heard, the movie makes us face so much more. I learned more, understood more, and yes, hurt more. I didn’t just cry...I wept. Never before at a movie have the tears flowed from my face...down my neck...and onto my shirt. I was too overcome most of the movie to use my tissue still clutched in my hand.

When I came home, some of my neighbors were still outside with children running around. They asked me how the movie was. I could only say the word “intense.” I wanted to say so much more but that is what came out. I tried to explain a few scenes, or the way I felt. But I was speechless.

I know the story so much better now. “Christ was crucified and He arose again!” That sentence means so much more to me now. The Messiah, God’s only Son. My Janie is with Him now comforted by his smile...and He is loving her smile, her brown eyes, her giggle...

Thank you Father...As simple as it sounds...Thank you.

Forever Missing Janie,
Janet Sims


CURING CHILDHOOD CANCER CAR TAG INFORMATION

If you live in Alabama........

The Janie Sims Children’s Foundation is helping to set up the “Curing Childhood Cancer Car Tag” for the state of Alabama.

We need your help. We need 1,000 commitments to buy a car tag before the state will actually make them. And we need to get these commitments now.

How much are they? Only $50…and most of this goes directly to cancer research at Children’s Hospital here in Birmingham. If we can get this tag in production, it has the potential to raise very substantial funds annually that are earmarked for Children’s Hospital.

Don’t wait until your tag is up for renewal. You can go now to your local tag office and tell them you want to sign up for a pre-commitment for the “Curing Childhood Cancer Tag.” This must be done right away because the state only gives you a limited time period to sign up the initial 1000 pre-commitments or this opportunity will pass us by.

We have set up a website:
www.curingchildhoodcancer.org
to answer any questions you may have about the tag or how to sign up. We also set up a phone information line at (205) 218-7452.

For people who cannot go to their local tag office, there is a power of attorney form on the website and instructions to allow a person to sign up by mail and Dan will complete the transaction at the appropriate tag office.

PLEASE TELL ALL YOUR ALABAMA FRIENDS so we can get the word out to the maximum number of people.

Forever Missing Janie,
Janet and Dan Sims

Wednesday, March 3, 2004 2:22 PM CST

More update coming soon...But for now I just wanted to let you know we are okay. We are following several families on Caringbridge daily...some who are doing great...some who are struggling to hold on...some who are grieving.

Until I have a little more time to update...

Forever Missing Janie,
Janet Sims

***Alabama "Curing Childhood Cancer" Car tag info is below***

Tuesday, February 24, 2004 1:40 PM CST

**Prayer request for

Abby : www.caringbridge.org/va/abbyallies


Katia: www.caringbridge.org/fl/katia_leukemiapage

Connor Stokes'family: www.caringbridge.org/mn/connorstokes

(I’m leaving the information about the Alabama Curing Childhood Cancer Car Tag below this update)

Hey everyone,

Things are okay here. It has been hard lately checking in on our "caringbridge friends." We read as parents watch their children go through so much pain...and we read about children who fought so hard and now are in Heaven.

Yesterday I spent the morning going through the winter clothes and bringing out some Spring clothes. David and Daniel's clothes are easy. Put away those that they can use next year and send the rest on to their cousin.

The girls' clothes...not so easy. Haley's clothes that she has outgrown go to Anna...Anna's clothes that she has outgrown...well, they should be going to Janie, just like always. Janie never minded getting the "hand-me-downs." Actually, she loved that the cool clothes her older sisters wore were finally hers! It marked that she was getting bigger and older. And it meant that she just increased her already massive wardrobe! How she loved her clothes, all sparkly (spawkly) and in style. She loved the feather boas, hip hugger bell bottoms, high heel sandles...Surely she would have grown up to be a clothes designer!

I miss her today. Everyday. I miss her hanging out with me at home while everyone else is at school. I miss holding her hand in the van, rolling the windows down, singing along with the radio...

Last night, Haley, Anna and the boys were out of control. They were running around laughing until their stomachs hurt. I had a hard time calming them down. And I couldn't help but remember when we were in Disney World. Janie got the giggles one night and couldn't stop. She was laughing SO loud....just the kind of laugh that keeps going on even after you forget why you are laughing in the first place. I happened to videotape her and her sisters during their laughing marathon. Well...all that gets me through today is remembering her laughter...and hoping that today in heaven that she is laughing and running around...having fun...being healthy...being my sweet little Janie...

Forever Missing Janie,
Janet


------------------------------------------------------------

Wednesday, February 4, 2004 12:08 AM CST

If you live in Alabama........

The Janie Sims Children’s Foundation is helping to set up the “Curing Childhood Cancer Tag” for the state of Alabama.

We need your help. We need 1,000 commitments to buy a car tag before the state will actually make them. And we need to get these commitments now.

How much are they? Only $50…and most of this goes directly to cancer research at Children’s Hospital here in Birmingham. If we can get this tag in production, it has the potential to raise very substantial funds annually that are earmarked for Children’s Hospital.

Don’t wait until your tag is up for renewal. You can go now to your local tag office and tell them you want to sign up for a pre-commitment for the “Curing Childhood Cancer Tag.” This must be done right away because the state only gives you a limited time period to sign up the initial 1000 pre-commitments or this opportunity will pass us by.

We have set up a website: http://www.curingchildhoodcancer.org to answer any questions you may have about the tag or how to sign up. We also set up a phone information line at (205) 218-7452.

For people who cannot go to their local tag office, there is a power of attorney form on the website and instructions to allow a person to sign up by mail and Dan will complete the transaction at the appropriate tag office.

PLEASE TELL ALL YOUR ALABAMA FRIENDS so we can get the word out to the maximum number of people.

Forever Missing Janie,
Janet and Dan Sims

Tuesday, February 24, 2004 1:40 PM CST

**Prayer request for

Abby : www.caringbridge.org/va/abbyallies


Katia: www.caringbridge.org/fl/katia_leukemiapage

Connor Stokes'family: www.caringbridge.org/mn/connorstokes

(I’m leaving the information about the Alabama Curing Childhood Cancer Car Tag below this update)

Hey everyone,

Things are okay here. It has been hard lately checking in on our "caringbridge friends." We read as parents watch their children go through so much pain...and we read about children who fought so hard and now are in Heaven.

Yesterday I spent the morning going through the winter clothes and bringing out some Spring clothes. David and Daniel's clothes are easy. Put away those that they can use next year and send the rest on to their cousin.

The girls' clothes...not so easy. Haley's clothes that she has outgrown go to Anna...Anna's clothes that she has outgrown...well, they should be going to Janie, just like always. Janie never minded getting the "hand-me-downs." Actually, she loved that the cool clothes her older sisters wore were finally hers! It marked that she was getting bigger and older. And it meant that she just increased her already massive wardrobe! How she loved her clothes, all sparkly (spawkly) and in style. She loved the feather boas, hip hugger bell bottoms, high heel sandles...Surely she would have grown up to be a clothes designer!

I miss her today. Everyday. I miss her hanging out with me at home while everyone else is at school. I miss holding her hand in the van, rolling the windows down, singing along with the radio...

Last night, Haley, Anna and the boys were out of control. They were running around laughing until their stomachs hurt. I had a hard time calming them down. And I couldn't help but remember when we were in Disney World. Janie got the giggles one night and couldn't stop. She was laughing SO loud....just the kind of laugh that keeps going on even after you forget why you are laughing in the first place. I happened to videotape her and her sisters during their laughing marathon. Well...all that gets me through today is remembering her laughter...and hoping that today in heaven that she is laughing and running around...having fun...being healthy...being my sweet little Janie...

Forever Missing Janie,
Janet


------------------------------------------------------------

Wednesday, February 4, 2004 12:08 AM CST

If you live in Alabama........

The Janie Sims Children’s Foundation is helping to set up the “Curing Childhood Cancer Tag” for the state of Alabama.

We need your help. We need 1,000 commitments to buy a car tag before the state will actually make them. And we need to get these commitments now.

How much are they? Only $50…and most of this goes directly to cancer research at Children’s Hospital here in Birmingham. If we can get this tag in production, it has the potential to raise very substantial funds annually that are earmarked for Children’s Hospital.

Don’t wait until your tag is up for renewal. You can go now to your local tag office and tell them you want to sign up for a pre-commitment for the “Curing Childhood Cancer Tag.” This must be done right away because the state only gives you a limited time period to sign up the initial 1000 pre-commitments or this opportunity will pass us by.

We have set up a website: http://www.curingchildhoodcancer.org to answer any questions you may have about the tag or how to sign up. We also set up a phone information line at (205) 218-7452.

For people who cannot go to their local tag office, there is a power of attorney form on the website and instructions to allow a person to sign up by mail and Dan will complete the transaction at the appropriate tag office.

PLEASE TELL ALL YOUR ALABAMA FRIENDS so we can get the word out to the maximum number of people.

Forever Missing Janie,
Janet and Dan Sims

Tuesday, February 10, 2004 10:14 PM CST

**Prayer request for Connor Stokes: www.caringbridge.org/mn/connorstokes **

(I’m leaving the information about the Alabama Curing Childhood Cancer Car Tag below this update)

Hey everyone,

I am finally typing this from my home computer and not at the library!! We finally got our internet set up and I am so glad I don’t have to run back and forth to the library to check email, etc.

The last couple of weeks have been a little busy. Besides the school, gymnastics, jazz dance, tball registration, etc, etc….I also got to go to an orientation with my church to Children’s Harbor to hopefully begin some volunteer work.

Last week I got to go to a Luncheon and Auction for the Leukemia & Lymphoma Society. They raised somewhere around $100,000 in just a couple of hours! Birmingham is a very generous city!

Then, Saturday night, I spoke to the TNT runners/walkers at the pasta party. Just a little over 12 hours before they tackled the Mercedes Marathon here in Bham, I was able to thank them all for their dedication to help the Leukemia/Lymphoma Society as they continue to research cures for blood related cancers.

There were some young children at the TNT pasta party who have had leukemia. I was so emotional watching them run around the room with their brothers and sisters. I just looked around and thought of Janie. I still don’t understand…I still don’t understand how she could have the best prognosis you can possibly have with leukemia…and still die. I will never understand.

There is not a moment in the day that Janie is not on my mind. Not a second goes by…it is a constant awareness that she is not here. No matter what I’m doing or saying or cleaning or whatever, she is on my mind. I think about what she sounds like, or a joke she liked, or how she looked when she was mad or happy or hungry. I think of every nuance of her…how she felt, how she smelled, how she liked her back rubbed or her hair brushed. When I’m awake, the thoughts never, ever stop. Ever.

And then I see her brothers and sisters- Haley, Anna, Daniel and David. If they only knew how many times I’ve looked into their eyes and have seen her eyes. When I see them make a certain facial expression or laugh a certain way, I see her and hear her. If David only knew how many times I heard him talking in another room and I had to stop whatever I was doing because he sounded so much like Janie…Or when Daniel giggled and it sounded like her. And everytime I snuggle with Haley and Anna at night, I think of holding Janie until she fell asleep.

I was driving by myself the other night and all of a sudden I began counting exactly how old the boys are. When I realized that they are 5 years and 7 months old, I realized that they are older now than Janie was when she relapsed. Soon they will be they age she was when she died-5years and almost 10 months. And then….David and Daniel will turn 6 this summer…and they will officially be older than their “older” sister Janie. She will forever be 5 years old.

And until I hold her in my arms again….I will see her in her siblings…in her father…in my heart…in my every waking thought…

Forever Missing Janie,
Janet


------------------------------------------------------------

Wednesday, February 4, 2004 12:08 AM CST

If you live in Alabama........

The Janie Sims Children’s Foundation is helping to set up the “Curing Childhood Cancer Tag” for the state of Alabama.

We need your help. We need 1,000 commitments to buy a car tag before the state will actually make them. And we need to get these commitments now.

How much are they? Only $50…and most of this goes directly to cancer research at Children’s Hospital here in Birmingham. If we can get this tag in production, it has the potential to raise very substantial funds annually that are earmarked for Children’s Hospital.

Don’t wait until your tag is up for renewal. You can go now to your local tag office and tell them you want to sign up for a pre-commitment for the “Curing Childhood Cancer Tag.” This must be done right away because the state only gives you a limited time period to sign up the initial 1000 pre-commitments or this opportunity will pass us by.

We have set up a website: http://www.curingchildhoodcancer.org to answer any questions you may have about the tag or how to sign up. We also set up a phone information line at (205) 218-7452.

For people who cannot go to their local tag office, there is a power of attorney form on the website and instructions to allow a person to sign up by mail and Dan will complete the transaction at the appropriate tag office.

PLEASE TELL ALL YOUR ALABAMA FRIENDS so we can get the word out to the maximum number of people.

Forever Missing Janie,
Janet and Dan Sims

Wednesday, February 4, 2004 12:08 AM CST

If you live in Alabama........

The Janie Sims Children’s Foundation is helping to set up the “Curing Childhood Cancer Tag” for the state of Alabama.

We need your help. We need 1,000 commitments to buy a car tag before the state will actually make them. And we need to get these commitments now.

How much are they? Only $50…and most of this goes directly to cancer research at Children’s Hospital here in Birmingham. If we can get this tag in production, it has the potential to raise very substantial funds annually that are earmarked for Children’s Hospital.

Don’t wait until your tag is up for renewal. You can go now to your local tag office and tell them you want to sign up for a pre-commitment for the “Curing Childhood Cancer Tag.” This must be done right away because the state only gives you a limited time period to sign up the initial 1000 pre-commitments or this opportunity will pass us by.

We have set up a website: http://www.curingchildhoodcancer.org to answer any questions you may have about the tag or how to sign up. We also set up a phone information line at (205) 218-7452.

For people who cannot go to their local tag office, there is a power of attorney form on the website and instructions to allow a person to sign up by mail and Dan will complete the transaction at the appropriate tag office.

PLEASE TELL ALL YOUR ALABAMA FRIENDS so we can get the word out to the maximum number of people.

Forever Missing Janie,
Janet and Dan Sims

Sunday, January 4, 2004 2:16 PM CST

January 4th....January 4th...January 4th....

Janie's one year Heaven birthday...and Dan's 46th birthday here on earth.

I have thought about this day for so long. I knew I couldn't hold back a day that would come anyway. I knew I couldn't hold back the memories of this time last year.

Last night I tried to keep busy. I tried not to be alone. I couldn't think about this time last year so I kept the kids close by as they always find ways to keep my thoughts far, far away from my grief.

But last night, late after everyone was asleep...I was so alone and so far away from Janie. I felt so far away that I couldn't imagine a time when I'd ever even held her or kissed her or wiped away any of her tears.

I thought of this Christmas. On Christmas Eve as I was getting everything ready for Christmas morning, I came upon a box that Janie took with her on every hospital visit. I knew it was filled with toys and crayons, and I really didn't need to open it. But of course I did. Sitting on the floor I opened it up and gently sifted through her things. I hadn't seen these things in so long and it was like I was opening up a Christmas gift just from her.

Soon, I had to put it all away and go back to preparing the living room for a magical morning. I worked late into the night and finally got into bed around 4 a.m. The kids and Dan got me up at 5:30 a.m. I felt in a haze and it reminded me of when getting an hour and a half of sleep would have been considered a full nights sleep!

Haley, Anna, Daniel, and David barrelled into the living room and screams of delight I'm sure echoed throughout Birmingham. Somewhere in my sleepy haze, I looked past them and out the window. The sun was coming up and an awesome pink sky seemed to fill our room.

After many hours of playing keyboards, roaring Hulk hands, searching for more batteries and swimming through a sea of ripped Christmas paper, I finally got to slip away.

It was late in the afternoon and I drove by myself to Janie's grave. No one else was anywhere in sight. She and I were alone. I knelt down and pressed my face into the grass and cried. In the distance was a beautiful pink sunset. The sky, pink as it was that morning coming through our living room window was again, an awesome sight.

Then the days slipped by. And soon, January 4th was here. Today. Was there a beautiful pink sunrise this morning? I don't know. The clouds above me are too thick to see beyond the grief. Somewhere in my heart I know she is at peace. I know she is getting a wonderful party, her one year Heaven birthday.

But on earth, I'm thinking of this time last year. I can't explain how hard today is. The bittersweet day of her leaving....teetering between being happy for her that she is no longer in pain, no more cancer, no more shots....and being so sad for all of us here because we miss her so much.
And so sad for Dan that our daughter died on his birthday.

Today we will celebrate life. Dan's here and Janie's in Heaven. We will remember that our life here is so brief in the scheme of eternity. Every day that passes, we are one day closer to being together again. We will rejoice in the knowledge that we will hold our daughter again. Today, through the tears...past the pain...we will celebrate life...

Happy 1st Heaven Birthday Janie!
Happy Birthday Dan!

Forever missing Janie,
Janet

Friday, December 19, 2003 10:22 AM CST

December 19....One year ago today, Janie received her stem cell transplant from her little brother, David. We had such hope then. It was a happy day. We held our breath and we waited for our miracle...

Our miracle came in the form of a few more days, a few more hours, a few more hugs and kisses.

We all still talk about Janie's transplant, her doctors and nurses, her room. But especially David talks about it all. He was there. He had surgery to insert a line to collect his stem cells. This healthy, active, little 4 year old spent 2 nights in a hospital with lots of scary procedures and tests and fussing around. He never complained. He just loved his sister and was willing to share his "special" blood.

Now, one year has passed. But Janie is still so present in our hearts, every single day.

Just the other day, I asked the children what they wanted for Christmas. David told me a long list of things he wanted Santa to bring. In the list he mentioned he wanted a telescope. None of my children have ever asked for a telescope and quite frankly, I was surprised he even knew the word! I asked him why he wanted one. He said "So I can see Janie in Heaven."

Sweet David, thank you for helping me smile and laugh and cry. Thank you for always showing your kindness. Thank you for coming up the other day and asking so quietly and with such care "Mommy, who is taking care of Janie now??" I got the chance to talk to you more about Jesus and His love. I got to talk to you more about God, our Heavenly father. I got to tell you that Janie is happy and healthy beyond her wildest dreams. And David, as I was telling you those beautiful things, it helped Mommy remember not to be so, so sad....that Janie REALLY is in a better place.

Oh how we still hurt. Oh how I want to hold my daughter in my arms. Instead, I will close my eyes. I will remember her transplant day, when she hid her head under the covers and tried to get some peace and quiet amid our excitement. I'll close my eyes and remember how many hugs and kisses I got to give to her that day...and how many hugs she gave me back.

Forever missing Janie,
Janet Sims

ps The picture above is from the Camp Smile a Mile Christmas party last year just days before Janie was admitted to the Stem Cell Unit. This is one of our last family photos. I had my arm wrapped around her so tight that she almost fell over!

Wednesday, December 10, 2003 11:21 AM CST

It's cold in Birmingham today. It's windy and misty. The clouds are thick and I can't see the sun. But I guess that is okay...because I don't think I could stand it if it were sunny with blue skies and not a cloud in sight.

Below is the update I wrote on December 10th of last year before Janie was admitted to the Stem Cell Unit. It was a year ago that my family spent our last night together in our home...in our beds...a family of seven. Janie slept in her monkey pajamas in her little handpainted bed and her sweet little angelic face pressed gently on her Belle pillow. Her last night in our room, with her mommy and daddy, her brothers and sisters.

I love the picture of Janie just waking up. Her big brown eyes trying to stretch open...moving slowly under her big purple blanket...too warm to get up. How many times I would just crawl in there with her and wrap my arms around her body and close my eyes as she would snuggle back with me...

One year ago, it was hard...but one year ago, there was still hope...still the transplant....still Janie. This year, there is just a cold winter day.

Forever missing Janie,
Janet


Update 12-10-02
As most of you read this email on Wednesday morning, we will already be at the hospital. Janie's cancer has progressed from the bone marrow and is already showing up in her blood. We can't wait any longer for the transplant. We will be at the hospital at 7am to be admitted, go for CT scan, etc and have radiation at 1pm and 5 pm. She is scheduled for 3 days of radiation, 3 days of chemo, 2 days of rest and the transplant on Dec. 19th.

Last Saturday, Janie was having a little leg pain. But on Sunday, it progressively got worse. On Sunday night, her pain was severe and she started on pain killers. I also noticed she began sweating at night again. I think I pretty much knew in my heart then that the cancer was really bad. Right before she relapsed in Sept, she had severe jaw pain and night sweats....so her pain the other night was unmistakable.

Yesterday, after an hour and a half meeting with the transplant doctor, Janie had a CBC. That night they called to tell us the leukemia was showing up in her blood. They confirmed that news today.

I just can't go into any more tonight. As you can imagine, our hearts are aching. Dan and I still hope for a miracle. According to the doctors, our chances for long term survival are very slim. The pain in our whole family tonight is so overwhelming. I am hurting beyond belief. I worry about Dan. He has remained so positive, so faithful and hopeful. But now, he is barely hanging on. Tonight he danced ballet with Janie....and now he is holding her in his arms as they sleep. So I'm asking for all you Daddys out there to pray for Janie's Dad.

That's all for now. I am going to get in bed with them and enjoy our night together. It will be a long time before we 7 are all together again.
Love, Janet

Tuesday, December 2, 2003 1:31 PM CST

Do you remember last December 2nd?? I do. It was a cold windy night. Around 6pm it started to sprinkle a little but soon stopped.

How do I remember this? I remember because it was a year ago that Janie rode in a horse drawn carriage with Cinderella (and Mommy and Anna) in the Vestavia Hills Christmas parade. Just before the parade I was afraid it would start raining and Janie wouldn't be able to ride...but thank God the drizzle stopped and she climbed into a beautiful fairy tale carriage.

Last night, Vestavia had their parade. But there was no Janie, no sweet smile, no blue hat, no waves to the crowd, no chanting of Janie's name...

Dan and the boys and I stood on Highway 31 watching the happy faces around us. The parade started. Candy was fying through the air. The boys were freezing cold but hustling for the candy and watching for their sisters in the parade with all the other cheerleaders.

Dan and I pushed back the tears, trying to stay happy for Haley, Anna, Daniel and David. Over and over in my mind, I kept thinking of last year. If I closed my eyes, I was in that carriage. I would look down into Janie's face as she looked astounded that the crowds were calling her name. In her sweet, shy self, she would never have dreamt that many, many people knew who she was....that many people prayed for her...that many people were touched and changed by her presence.

Last year, when the parade was over, Janie didn't want to leave the carriage. She didn't want to leave Cinderella and she didn't want to leave the fairy tale. She was exactly what she dreamed of being...A Princess.

I knew that horse drawn carriage was at the parade again last night because Dan told me he saw it when he was dropping the girls off with the other cheerleaders. As the parade moved in front of us, I didn't want to see that carriage. Please God....don't let me see that carriage...

We saw Anna first with her group....then we saw Haley with her group. Still no carriage in sight. Dan and the boys and I decided to leave. We needed to go get the girls at the end of the parade anyway. Thank goodness we wouldn't see the rest of the parade.

I ran in the cold, windy night...running to go get the girls but also because the memory of last year was too fresh and too beautiful.

We found the girls and began walking back to the car. Don't look at the end of the parade, I kept telling myself. Don't look...

But I looked up the street just once. And there it was. The beautiful carriage...the clicking of the horses feet...princess inside...and some little girls wearing crowns....and no Janie.

Oh Janie...How I miss you. How I loved your precious smile and your sweet soft voice..."mommy, I wish I was a Princess..."

Janie...you will always be Mommy's little Princess.

Forever Missing Princess Janie,
Janet Sims

Tuesday, November 25, 2003 11:56 AM CST

Please visit:
www.caringbridge.org/al/tiffany
Tiffany and her family need our prayers. She is in the Stem Cell Transplant Unit at Children's Hospital in B'ham.

Wednesday, November 5, 2003 12:47 AM CST

10 Days, 60 Advil, and many icepacks later...

The 2003 Marine Corps Marathon....Mission: Accomplished

October 24, 2003:
Arrived with teammates in DC and checked in Crystal City Hyatt

First order of business: Nap

Later, checked in at the marathon expo. Marines everywhere. Got a little scared when they barked out orders to us as to where to line up for registration, t-shirts, etc. I pretended the marines didn’t scare me and then I ran like a little girl back to my room.

October 25, 2003
In the early morning hours of Saturday morning, Dan and the children arrive in DC after driving all night. 14 hours...in a van...with screaming children...Until further notice, Dan has been upgraded to “Saint Daddy”.

I attend TNT pasta party for my “carbo loading.” Dan and the children meet with his brother Jack for a tour of DC.

Later that night, I meet with my sister Karen in her room to decorate our running shirts. With much care and concern, we wrote out two columns on the backs of our singlets. One column: In honor of ...followed by several children who have fought leukemia and are WINNING. The next column: In memory of...followed by a painful list of children who died way too young after a difficult battle. Between the two columns was a picture of Princess Janie.

Back to my room. Set alarm for 4:45am. Arrange my gear for the marathon, set two more alarms, eat more carbs, check the alarms, go to bed.

October 26, 2003

THE DAY I have been talking about for 4 long months.

4:45am Wake, Cry, Dress

5:30am Meet team for breakfast and find comfort in the terrified look of all the TNT runners.

6:15am Herd onto buses with all the other 600 TNT runners.

8:15am Line up with approximately 16,000 runners after I’ve gone to the porta potty approximately 15 times.

8:30am Starter gun is fired...I want to run directly behind a tree, rip off my running number and pretend like I’m a spectator!!

Too late! I was approaching the start line.

8:45am Karen and I actually get across the start line and our computer chip on our shoes marks our official start time.

I begin running.

8:46am Some of the men running are heading straight for a row of trees. Guess they missed the 2,000 porta potties lined up everywhere in DC!!
Just to let you know...I got a few of you on camera!!

Mile 1: WOO HOO!!! FEELING GREAT!!

Mile 2: WOO HOO!! Having a good time now!

Mile 3: WOO HOO! Still keeping up with Karen, aka “the toothpick”!

Mile 4: Woo Hoo! Still keeping up with Karen and we are running with the group scheduled to finish in 4 hours 30 minutes. ( I’m thinking that I told Dan I’d be done around 5 hours 30 minutes but I’m hanging with the 4:30 group! What if he doesn’t get there in time!! I think I’m going to finish an hour ahead of time!!)

Mile 4.5: woo hoo...Doing okay but Karen went on ahead. That’s okay...I’ll hang with the 4:45 finish group.

Miles 5-12: woo...Getting a little harder. Feeling like my Iliotibial Band in my left leg may start hurting. Now hanging with the 5:00 finish group

Mile 13.1: WOO HOO! HALFWAY! Made it in 2 hours 33 minutes…still a long way to go, but making good time. If I keep it up, I’ll finish a little over 5 hours and well before my goal.

Mile 14: Oh no... IT band getting a little painful. Searching the group of runners ahead of me trying to find Karen. Searching the streets for Dan and the kids amid hundreds of screaming spectators.

There they are!!! Four sweet little familiar faces screaming “THERE’S MOMMY!!!” I run hug them all and then jump back in the street to continue on.

Mile 15: Keep GOING! I scream over and over in my head. I’ve GOT to make the bridge at mile 22 before they close it to runners. If I don’t get to the bridge on time, the marines put you on a bus and ship you to the end without getting to finish...I HAVE TO MAKE THAT BRIDGE!!!!

Mile 16-17: Does anyone have a roller skate I can strap on to my left leg????

Mile 18: OW! OW! OW!!!! Keep going...Drink more gatorade...eat more power gel...WHERE ARE DAN AND THE KIDS??? I need some help!!

Mile 18.5: YES! There are the SIMS screaming for MOMMY! I run to them hugging them...feeling like a rock star!!! I tell my girls that my IT band is killing me...They have heard me talk about this for several weeks and they knew this was going to be my biggest hurdle. (After my long training runs when I got home, they would ask “Mom, how was your IT band today?” Are my kids the only ones who know in depth about Iliotibial Band Syndrome and tendonitis, etc??)

Mile 20: I’M HOBBLING...I’M LIGHTHEADED...I’M RUNNING A MARATHON??? I'M IN THE WRONG PLACE!! AND I’VE GOT TO GET TO THAT BRIDGE!

Mile 21: Marines and civilians are lined down the streets...screaming “YOU LOOK STRONG...KEEP GOING...YOU CAN DO IT!

Mile 21.5: WHERE IS THAT *#!*#& BRIDGE !!!!

Mile 22: THERE IT IS! A beautiful, long, long, long bridge. Just to make sure, I yell out to the runners around me.. “Is this THE bridge??? Did we make it???” Somewhere in the distance someone used his failing energy to yell back “YES!!!! We made it!!”

Mile 22.1: Oh no...still more miles to go...I’ve focused so much on that stupid bridge that I forgot I still have over 4 miles to go.

Now I feel nauseous...and to borrow a quote from John“The Penguin”Bingham...at this point I felt like "carbo un- loading”.

Miles 22.2-25: “Excuse me!!! Yeah...you Mr. Marine guy over there...Are you armed today??? PLEASE SHOOT ME NOW!”

Mile 25.1: A Marine gives me a personal order as I face a small hill and he sees my struggle...He barks at me... “TAKE THAT HILL ! YOU CAN DO IT! THERE AIN’T NO WHERE ELSE TO GO BUT HOME GIRL!”

He’s right...There ain’t no where else to go but finish. I was so close. But my IT band was giving out. My muscles were locking up. Many runners on either side of the road were clutching their legs in pain. Some runners were being picked up by ambulances. Others were tending bleeding feet, chafed skin, dehydration. They had come so close and were dropping out.

I was limping, crying, praying...my goal of finishing in 5:30 was long shattered.

Mile 25.5: One of the TNT run/walk coaches waited for me. He ran me in to the 26 mile mark and told me I could do the last .2. I was almost there.

Mile 26: I can’t even explain how FAR .2 miles is in my mind at this point. I felt like it was as far away as heaven.

Mile 26.1: I think I won’t make it!! Please God...help me make it!! Then...out of the crowds of people emerges a familiar face...my sister Karen...She falls in along side me and begins running even though she had already finished an hour and a half before me.

Karen points out the finish line just ahead. “Janet, you can do it.” She whispers to me. She takes my hand. I close my eyes. She leads me like a little girl.

Then, just yards from going under the Finish line...she hugs me, tells me she loves me...and that I needed to go under that finish line alone. And as mysteriously as she came to me, she quietly fades back into the crowds of people.

This was my moment.

I hear the cheering crowds who are so close to me...but in my lightheadedness...the cheers seem muffled and distant.

I raise my arms in victory.

I run slowly, awkwardly...

And I finish the Marine Corps Marathon.

My time? 6 hours and 37 seconds according to my shoe chip.

My thought the very moment I crossed the line? I wish Janie was there at the finish line...giving me the first hug...the first kiss...the first smile.

Instead, the marines gave me a medal, covered me in a silver blanket, took off my shoe chip, and took my picture.

As I cried in physical pain and emotional pain, I thought that after months of talking about doing this for Janie, I really thought she would be there at the end...But I realized...she was with me the whole marathon...running along side me...

Soon, I met up with Dan and the children. I checked in with the TNT runners booth. I was the very last one to finish from my team. But I expected that and I’m not disappointed.

For the next few days as I looked back at my marathon, I often had a feeling of incompleteness. Why?? After completing 26.2 miles, shouldn’t I feel a great sense of accomplishment and completion? A sense of finality? A sense of “IT IS OVER!”??

But I didn’t. And it took me a week before I figured out why. My mission for the Marine Corps Marathon was not as simple as finishing 26.2 miles...instead, my mission was to raise money and awareness for the Leukemia and Lymphoma Society. Until blood related diseases are completely gone....I will never be “finished.”

So, my marathon continues...

Forever missing Janie,
Janet “the slowest marathoner” Sims

Wednesday, October 29, 2003 10:21 AM CST

I am back in Birmingham, Al ! I will update all about the marathon as soon as some oxygen returns to my brain!

But for now, just quickly...

Yes... I finished the Marine Corps marathon!!

Yes...It was soooo hard!

NO!...I didn't win! (but I did get a cool medal)

Yes...I am very sore.

No... I will not do another full marathon anytime in the near future.

And finally, Was it worth all the pain???? YES! The TNT runners raised almost 2 million dollars for the Leukemia and Lymphoma Society!!

More later.

Forever missing Janie,
A very sore Janet

Thursday, October 23, 2003 7:50 PM CDT

Over nine months ago, Janie died. I can’t believe I have been able to breathe since then. I can’t believe I’ve been able to walk or talk or do just about anything…especially run.

It wasn’t long after Janie went to Heaven that the other kids started back in school. I was home alone in the house. If I’d had it my way, I would never have gone outside again. But one day, a friend called me. It was Amanda Adams. She was sitting in my driveway and calling me from her cell phone. She wanted me to come outside. I really didn’t want to, but something made me go out to see her.

She told me to get in the car, we were going for a walk. She seemed so confident and smiled just the right way. I did what I was told. I got in her car. I think mostly because I didn’t know what else to do. I was completely at a loss as to what my life was about. Janie was gone. There were no meds to give, no doctor’s appt’s to run to, no sick child to serve. I had no focus.

So I got in the car with my friend ( who I found out later was one of many women in my community who were concerned about me). She took me to a trail not far from my home. We walked what felt like 20 miles. I think it was more like 2 miles.

I don’t recall what we talked about. I don’t recall much more than the walk and then going back home. I was sore getting out of the car and hobbled back inside.

Now, nine months have passed. I went from having NO exercise to walking, then jogging a few feet, then running a mile…then 2 miles….then more and more and more.

This is my last update before I run 26.2 miles in Washington D.C. in the Marine Corps Marathon. I don’t know how it all happened…except to say that it all goes back to Amanda sitting in my driveway, hoping I’d come out and remember that my life was still worth living.

I’m still not very good at running…but running to raise money and awareness for the Leukemia and Lymphoma Society gives me focus. Last month I was given the honor of speaking to the TNT runners in my area. It was the first time since Janie died that I have spoken publicly. My speech, I’m sure, was just as inadequate as my running…but like running, I did it anyway.

I’ll be proud on Sunday when I put on my purple TNT shirt. I’ll be proud that I am associated with such dedicated people such as my team mates. Each person on my team has trained and raised money. Thank you to: Coach Al Dimicco (who calls our team a bunch of rebels simply because we changed his training times to what we wanted and ignored his maps!! Sorry Al), Brad Baker, Banks Petrey, Karen Prichard, Amy Leath, and Krista Surtees (During training, Krista unfortunately suffered stress fractures and will not be in D.C. with us. Get better soon, Krista! Good luck in Disney!!) Thanks also to Lance and Sarah from TNT who continue to encourage our rebellious group….wish they were going with us.

I think you can track me on Sunday on the Marine Corps Marathon website:
www.marinemarathon.com
You may need my bib number. I think it is: 22139


To my Janie, this is for you sweet girl. I will not forget your struggle. I will not forget the struggles of those who are with you now and those who are still here fighting.


Forever missing Janie,
Janet

Saturday, October 18, 2003 4:20 PM CDT

Hey everyone.

Short marathon update: Did my long run (11 miles) for the week today instead of tomorrow. Glad to have it over with. I'll actually get to go to church in the morning instead of getting up at 5am and running while everyone else is worshipping!!

Now to other stuff:

I know on caringbridge I reveal a big part of my family and our lives. I've always tried to walk the fine line between being really honest about how we are doing, yet being sensitive to Dan and the children...and their privacy. But sometimes something so incredibly sweet, or sad, or innocent comes from them about their feelings about Janie. They all four deal with their grief in many ways. They draw a picture, write a story, recall memories, etc. each in their own way, their own words, and in their own time. And now I want to share with you one of those moments that tugs at my heart and brings me to a place of quiet mourning.

A few days ago, David (who is now 5 years old and was Janie's stem cell donor) was sitting at the dining room table with a mass of papers and crayons in front of him. He was very focused on his task and was obviously working on something that was really important to him.

I was cooking nearby in the kitchen and Dan was close by helping with homework or something. Every few minutes David would ask how to spell something. Either Dan or I would spell out whatever David needed but we were not really concentrating on what he might be working on.

"How do you spell God??" he yelled out.
"G-O-D" Dan said.
A few minutes went by.
"How do you spell love??"
"L-O-V-E"
David kept working. He asked how to spell angel and heaven and thank you among many other words.

I stopped cooking. I went to the table where David was getting a little frustrated trying to get down on paper what was in his heart.

"Want some help?" I asked hoping he would say yes and let me share in his moment.
Dan encouraged David to let me help.
"Tell me what you want to say and I'll write it for you."

I didn't have to ask twice. David began talking and I wrote as fast as I could. He was going so fast I had to ask him to slow down. But how do you slow down your heart, your love, your feelings??

Below is what David had me write. I am not going to edit it. The grammer is his own and just fine with me. So here is goes:

Dear God,

I thank you for my sisters and brother. And I love Mommy and Daddy. And I love God. Thank you for watching over Janie and I hope she feels better and I want her to come back home. And I love Janie for giving God to go to a special place in Heaven with all the angels to play with. I love Janie the most but Janie is in Heaven and all the things I did for making Janie feel better. I know she's having fun. I love Janie.
Amen.
David Sims

I read it back to him. He smiled.
"Is that what you wanted to say?" I asked.
"Yes." He said with a sort of satisfaction.
He ran off to play.

Dan and I looked at the little paper with the prayer. We looked at each other, with a million words not spoken but each knowing what the other felt. Pain, grief, loss, love, pride,concern, uncertainty.

We hugged. Walked away to gather our own thoughts. And I said my own quick prayer.

God,
Bless my children. They miss their sister. They have gone through so much. So much more than I ever wanted them to go through. Thank you for their innocence and sweetness.
Amen

Forever missing Janie,
Janet

Wednesday, October 15, 2003 12:14 AM CDT

Hey everyone. Just a minute to update you on the upcoming marathon I'm attempting to run....

For months now I have been training, running, sweating, and every once in a while screaming "WHY AM I DOING THIS!??!!" (Well, we all know why I am doing this....to raise money and awareness for those suffering from blood related diseases.) All these months I have been increasing my mileage. My coach has a specific training guide that builds us up and then, as we approach the marathon, we are to begin tapering our training. We are actually running less miles each week until the big Marine Corps Marathon on Oct. 26th.

The coach gave us a 3 page info sheet convincing us on the importance of tapering our runs. Do marathoners really NEED this??? Trust me, no one has to tell me twice that I need to train less!! Compared to the 20 miler I did a few weeks ago, I totally enjoyed my "short" 13 miler I did this past Sunday!! Coming up this weekend, I think I get to cut back to 11 miles for my long run...and only 13 miles for the weeks runs combined.

need to run..

Forever missing Janie,
Janet

Monday, October 6, 2003 2:47 PM CDT

Today is October 6th. Two years ago our life changed when we found out Janie had leukemia. Today I just don't have the words to tell you how I feel. Maybe later.

Forever missing Janie,
Janet

Monday, September 29, 2003 10:46 AM CDT

Hey everyone,

Marathon training...
I did my 20 miles yesterday!!! It took a little longer than I anticipated but I felt stronger than I expected. I started off with my sister Karen (aka The Toothpick) but I didn't see her for long as she breezed on by me. I tried to take it a little easy because of my continued Iliotibial Band Syndrome. My leg is doing much better so I was able to run about 75f the time. It took me 4 hours and 15 minutes to finish the run. (The marathon is coming up soon... October 26th)

Back to my story about Daniel's surgery that I started last time....

Taking Daniel to Children's Hospital for his surgery was about more than I could stand. We went in early that Friday morning and it was the first time I'd gone back to the parking deck. It brought back so many memories of taking Janie in for the million doctor's visits. I always let her tell me what level she wanted to park on. On the pretty days, she wanted to park at the very top so we could look up at the sky as we walked to the elevators. I thought of her carrying her backpack filled with crayons and books and activities. On the bad days, I'd carry the back pack. On the really bad days, I'd run get a wheelchair or wagon to wheel her in. On the critical days, I'd carry her in my arms and run with her as fast as I could to the clinic.

When I took Daniel into One Day surgery, he was scared. Why shouldn't he be? His sister died in this hospital. He was about to have surgery. He even had the same nurse Janie had when she had her port taken out and her Hickman cath put in on November 12, 2002. I had to leave for a moment and run down the hall to the bathroom where I had to calm down my breathing before I fainted. I knew I was there for Daniel...not Janie...and my son needed me to be just as strong for him.

Back in the room, Daniel fell asleep in my arms as we waited for his turn. When they came to get him, I rolled him onto the bed and we wheeled him to the O.R. Then I had to watch as the nurse took him away from me.

Dan and I sat in the room nervously waiting for it to all be over. Pat Cotton, Janie's nurse practitioner came to sit with us. Daniel was soon brought back to us and I sighed a breath of relief when I saw him. It took a while longer before he woke up and we could go home.

As the nurse was taking us to the car, she asked me how many children I have. I told her I had 5. Then I explained about Janie and that she had been her nurse. She said she was so sorry we had lost Janie....But she understood. 13 years ago she lost her 4 year old son to cancer. I didn't know that. So many people you meet...and you never know they too may have suffered losing a child.

On the way home from the hospital, Daniel threw up several times. His brother and sisters were very upset about his surgery but felt okay when they saw he felt better that night. Me too.

After the whole experience, I felt shaken. Being back at Children's was familiar and scary but there was a comfort too. Being back where we had spent so much of Janie's 15 month treatment was filled with memories in every corner of the hospital. I heard her voice in every hall. I saw her pushing her IV pole. I remembered a million conversations, a million cries, a million giggles, a million prayers...

So very happy that Daniel is okay and so sad that my Janie went through so much...

Forever missing Janie,
Janet

Thursday, September 25, 2003 2:37 PM CDT

Just a quick note to you all checking in on my marathon training...Yes, I did the 15 miles on Sunday. I had to do some walking but hey, I got the job done! My leg is doing okay. I never know when I go out for a run if I'm actually going to be running, walking, or limping. For now, I'll take what I can get.

On another note, one of my boys had to have some minor surgery last Friday to repair a hernia. (Is any surgery ever MINOR??). He is fine, although he was very scared. Now, the hardest part is trying to get him to listen to doctor's orders and stay fairly inactive for 3-4 weeks. Does anyone really know a way to keep a healthy 5 year old boy from jumping on a bed or running around like a Power Ranger??

I will try to update tomorrow and tell you a little more. But, right now 4 little kiddos are waiting for me to pick them up from Elementary school. Then off to jazz, gymnastics and soccer!

Forever missing Janie,
Janet

Thursday, September 11, 2003 1:49 PM CDT

**********Saturday, September 20,2003******************

We had such a great response to Janie's lemonade/drink stand that we will be back this Sunday too!

Thank you to all who were able to come. I know lots of you were unable to be there but were thinking of us and we sure appreciate that. Some of you weren't sure how to get to the fields (It is on Merry Fox Lane off Willoughby Road in a neighborhood behind Vestavia Central Elementary.)

I will try to update again next week.

Forever missing Janie,
Janet


September 11, 2003
"Janie's Lemonade Stand"

Kids sure do love to have a lemonade stand. They love to plan it, buy the stuff, color the posters, set out the table, and they will sit in the hot sun for hours at their little homemade table.

Three years ago, my oldest daughter (Haley) decided she wanted a lemonade stand. So, we did. What a blast we had. We sat on some wobbley chairs in a nice grassy area and all the kids in the neighborhood came to sit with us.

Then, last year Anna decided she too wanted a lemonade stand. I told her that was a great idea. This was soon turning into a family tradition. Anna had a blast at her lemonade stand and we immediately started talking about the next year would be Janie's year.

This year was Janie's turn for her very own lemonade stand. We wish with all our hearts that she were here to plan it, buy the stuff, color the posters, set out the table....

Well, we have decided that we will honor our promise to Janie. She will have her very own lemonade stand!

We invite you all to come this Sunday, September 14th from 12:30pm to 4:30pm at the soccer field behind Central Elementary (VHEC) in Vestavia Hills. The Vestavia Hills Soccer Club has graciously given us permission to have Janie's lemonade/drink stand during the kickoff of the U6 soccer teams. Last year, Janie was able to attend this first outing with her soccer team at Liberty Park....she relapsed soon after and was never able to play soccer again. This Sunday we will have a poster of Janie at that event from last year.

We hope you can come join us. If you need directions to the field, you can call the Vestavia Hills Parks and Recreation. (All proceeds for the lemonade stand will go to The Janie Sims Children's Foundation which benefits many sick children and their families.)

Forever missing Janie,
Janet

P.S. For those of you who remembered that it was one year ago today that Janie relapsed...thank you for your prayers. I am trying to stay occupied so I don't fall apart. Until today, I could say "one year ago today, Janie was doing great..." Now, I have to say "One year ago today, my world began falling apart..."

I will throw myself into preparations for the lemonade stand so that next year I can say " One year ago today, I began to find some peace..."

Sunday, September 7, 2003 4:30 PM CDT

Marathon training update...

The news on my bum leg is "Iliotibial Band Syndrome." (It is as painful to experience as it is hard to spell.) Basically, it is a long band that runs from your hip to below your knee. It is obviously irritated at the knee area and I have to do ice, advil, and stretches. I can walk with no pain, but it is very painful when I try to run.

Anyway...The Marine Corps team was scheduled for 15 miles today. We are in a critical point of training....and I could only WALK! Acutally, I ran 1 mile and then walked a decent 12 more. I was tempted to get a little down about doing only 13 in the walk mode instead of a strong 15 miler....but I stayed focused and did the best I could do.

I saw the coach a few miles into the morning and he gave me a good pep talk. I will try to be patient as I scale back on hard training.

Got to go...Have to pick Anna up from cheerleading practice


Forever missing Janie,
Janet

Tuesday, September 2, 2003 11:05 AM CDT

Just a short note today for those of you checking in on my marathon training.....

I did the 17 miles on Sunday! Around the 7th mile I started having knee trouble. I took it as easy as I could with 10 more miles to go. Had to do more walking than I wanted. I was disappointed that my body was not cooperating with my good mental status that day. Anyway, I'm waiting to hear from my coach as to how to deal with my leg.

Everything else is going okay. Haley starts back in soccer tonight and Anna cheers her first game on Thursday night. On Sunday, the boys will start soccer. I'll keep you updated on their activities.

On a side note...I was on a search for some paperwork this weekend that forced me to go through some of Janie's personal items. For the first time in a while, I was holding her favorite beanie babies. I was holding a drawing of a flower with the words "To Mommy" written on them. I was holding her Snow White dress she wore last Halloween. I held numerous hospital bracelets that she had slipped into this box.

Once I realized the paperwork was not in this box, I folded everything neatly and placed it back gently. Snapped the lid down. Pushed the box away, out of sight. Wiped the tears and walked away.

God is surely living in me and helping me to put one foot in front of the other. There is no other explanation as to how I could survive a day and keep on going.

Forever Missing Janie,
Janet

Sunday, August 17, 2003 3:23 PM CDT

Hello everyone!

The boys had a blast the first day of Kindergarten...despite the fact that David fell off the monkey bars. Tough way to start off your first school playground experience. But all else seems to have gone well.

Now, I feel like I need to thank so many of you for your donations to the Leukemia and Lymphoma Society, Camp Smile a Mile, Children's Harbor, etc. These are great groups that are highly respected, hard working and caring. You can feel confident that your money is being used wisely.

On to my marathon training.........

Today I woke at 5a.m., got ready, drove across town in the dark and was running by 6a.m. The fog was thick and suffocating. I prayed for a little rain just to cool me down, but no luck. The humid air filled my lungs and I couldn't talk to the other runners. I just sweated, ran, and concentrated on inhaling and exhaling. By 6:30a.m. I would have given a thousand dollars for an oxygen tank.

By 7:30a.m. I lost my running partners as they sped on ahead of me. I probably could have watched their running shoes going warp speed, but I couldn't see anything...my eyeglasses were steamed up and I ran mostly with them in my hands. (I hope I didn't run anybody off the path as I was running blindly down the trails!)

As I ran on by myself, I used my time to think of Janie, Colby, Alexandria, Seth, Deanna, Austin, and so many other sweet souls that have been cured in Heaven. And I think of Shelby, Ashley, Matthew, Sarah Anne and so many more that have been through treatment.

A little past 8:30a.m., I was still running. The fog had lifted and I was finally able to breathe. I had gone 13 1/2 miles and still a way to go for my 15 mile goal today. I was a little cranky, a lot tired, very smelly, and dripping wet. With a half mile to go, I stopped saying "good morning" to everyone I saw on the trails.

With a few yards to go, I became very wobbly as my legs shook beneath me and my feet were near combustible. But, after 2 hours and 59 minutes...I finished the longest 15 miles that I have ever encountered. Did I feel victorious??? NO! I felt like I wanted to throw my stinky running shoes at the first person I saw and then go home to take a bath in Gatorade!!

Okay, I guess I felt a little victorious.

Then on the way home from the 15 miler, a conversation I had with a woman kept popping into my head. This mom has 2 young and healthy children. When I saw her the other day she said, "Janie changed the way I mother my children."

I was not surprised by her comment. I had heard similar revelations by other mothers. As I smiled, I let this particular mom continue. "I used to have my house perfectly clean. I spent so much time making sure it was all in order. But now, when the kids ask if they can go somewhere or for me to play with them, I do."

How proud I am to be Janie's mom. How proud I am to have known someone so divinely powereful in her shy little life that she could remind moms everywhere that loving your child and enjoying your child is more important than a clean kitchen floor. Janie helped so many moms. But I am not surprised...because I am one of the moms that she changed forever.

Forever Missing Janie,
Janet

Friday, August 15, 2003 11:40 AM CDT

Today I sent my little guys to big school. David and Daniel put on their backpacks and ran into school this morning where they are now big Kindergarteners. Do you all remember your Kindergarten teacher?? Remember what fun it was to play with your friends and paint and draw and have snacks?? I know they will have a great year.

But...this morning as I took the "first day of school" picture...I was holding back the tears. Yes, I sniffled when I walked the twins to their classroom. Yes, I sniffled back to the van. And yes...I went straight to their bedroom, threw myself on their bed and cried.

You all know my tears. They are typical sniffles of sending off my youngest to big school. But they were also because Janie should be in first grade this year. For years I have looked forward to this particular school year. All "5" would be in the same school...Haley 3rd, Anna 2nd, Janie 1st, David and Daniel Kindergarten. But that was never meant to be.

I could go on...but believe it or not, it is already time to pick the boys up from their first day....better go get some tissue before I leave.

Forever Missing Janie,
Janet

Wednesday, August 6, 2003 6:23 PM CDT

Hello everyone,

I'm staring at a blank screen in front of me and I don't know what to say to you all. I'm missing Janie so much. My life is so incomplete without her. I want to hold her. I want to kiss her. I want to laugh with her and hold her hand. I want us to ride in the van on a sunny day with the windows rolled down, the radio playing our favorite songs, and I want to look over at her beside me with a smile on her face as we sing along.

But instead....I cry myself to sleep. I wake up, open my eyes, realize she is gone....and I wish I were dead. I beg God, please take me. Please let me go. Isn't it my time yet?? Is this not more than I can bear?? Don't make me live my life without her. But in God's silence is His answer: No, it is not my time yet. And I can bear the pain with His strength.

Not long after Janie died, someone else's daughter died. My friend who I grew up with in Tennessee lost her 15 year old daughter and they aren't even sure why. A healthy, active teenager died and they can't explain it all...just that it must have been her heart. A couple of months after my friend and I buried our little girls, we discovered something strange. Our daughters both were born on March 19th....exactly 10 years apart. This past March her daughter should have turned 16 and my daughter should have turned 6.

Along with other parents who have lost their children to cancer, car wrecks, medical reasons, etc, we struggle. We mourn. What can set us into deep mourning?? A photo, a certain song, seeing their friends at school or church....One day I was cleaning behind my dresser and I found a piece of paper with Janie's handwriting. Sometimes I find her hairbows or homework or hats. I even still get a soccer magazine for her. When I see her name on the address label I don't know whether to cry or sob.

I didn't know you can cry until you feel like you are going to faint. But now I know you can. My grief for her is great, vast, infinite.....just like my love for her.

Forever Missing Janie,
Janet

Sunday, July 20, 2003 5:57 PM CDT

Hey everyone! I miss writing on caringbridge so much! My internet still hates me and refuses to get me online...So, I am at the library. Not a warm and fuzzy place to come and bear my heart...also, I'm used to sitting at home in my jammies and typing away...I don't think they allow that here.

Just have a minute. All is going okay. I ran 11 miles this morning with the TNT runners. I am sore, tired, and cranky!

more later,

Forever missing Janie,
Janet

Thursday, July 3, 2003 7:27 PM CDT

Hey everyone! Don't get excited...my computer is still not cooperating at this time! But Anna and I are at the library and I wanted to take a moment to update a little.

I want to tell you all about my training for the Marine Corps Marathon but I only have time to go into a little bit. So here goes....

I officially started with the TNT (Team n Training for the Leukemia and Lymphoma Society). I met with them for the first time 3 weeks ago. Our first run together was 6 miles. We meet every Sunday at 6:30 a.m. and each week we will increase our mileage. The last 2 Sundays we did 7 miles. This Sunday will be 9 ! During the week we run on our own for a weekly total of 16-20 miles (excluding the Sunday long runs). I have to say this is very challenging.

On to the Sims children. They are all doing well. Daniel fell out of bed in the middle of the night and scraped his head on the nightstand. He is okay....he has done this before. We keep telling him he needs a seatbelt for his bed!

Haley learned to dive in the deep end of the pool not long after the pool opened. We are sooooo excited since she has been trying for several years to learn. Just a few minutes after she dove in for the first time, I looked over at David...He raised his arms above his head and HE dove in! Okay, it was more of a belly buster (or as I say, it looks like when Buzz Lightyear says "TO INFINITY AND BEYOND" and takes a flying leap!)

I need to run. Tomorrow is fourth of July...my boys will turn 5 years old ! Yes, they were born on the 4th and they are all FIREWORKS. We tease them and tell them that we were going to name them "Sparkler" and "Firecracker." I still think those would be appropriate.

Also, tomorrow will be 6 months to the day that our little Janie went to Heaven. We miss her very much. I just can't get into that right now...but you all know we struggle and get through each day with our Lord's help.

Forever missing Janie,
Janet

Tuesday, July 1, 2003 11:52 AM CDT

Hello everyone!

Just a quick note to tell you my computer is still down!! I will try to update soon. Hope you are all okay....

Forever missing Janie,
Janet

Tuesday, July 1, 2003 11:52 AM CDT

Hello everyone!

Just a quick note to tell you my computer is still down!! I will try to update soon. Hope you are all okay....

Forever missing Janie,
Janet

Sunday, June 15, 2003 0:31 AM CDT

To Dan...

I know this day will be filled with mixed emotions for you. You will be showered today with sweet little gifts from Haley, Anna, Daniel, and David. I know you will love everything they made for you. And I know today you will be missing Janie.

I don't know any other father who has loved their children more than you. You are a great dad...All five of our children love you so much because they know your love for them is unconditional. Because of your commitment as a father, they feel loved, secure, happy, content, and safe.

Thank you, for never missing a day in telling them "I love you." Thank you for never missing to kiss them before you leave for work. Thank you for never turning down the chance to talk to them on the phone...even when they call you over and over at work. Thank you for taking them swimming and bike riding, even when you are exhausted. Thank you for "running tickles", for wrestling them in the floor, taking them to a job site, taking them to WalMart and Home Depot. Thank you for making them Brownies every night and sneaking them the leftovers the next morning before I get up.

Dan, thank you for thinking all the things you do for our babies every day is a privilege, and not a labored task. You are the absolute best.

Happy Father's Day...
Love, Janet

Thursday, June 12, 2003 9:48 AM CDT

At 3:30am, Colby left his pain on earth and is now healed with our Lord. We will pray for his dear family to have strength as they make arrangements for their son.

Forever missing Janie,
Janet





Wednesday, June 11, 2003 10:50 PM CDT

Wanted you all to know one of our little buddies is fighting tonight. We ask for prayers for Colby Cole. Please visit his family at:
www.caringbridge.org/pa/colby

This past weekend Dan and the children and I went to Fairhope, Alabama for Austin Baker's visitation. What a beautiful tribute to a beautiful little boy. Austin was born just a few weeks before Janie. They both lived too short of a life and with way too much pain. But one thing is for certain...they were both showered with love during their short earthly life. My heart is aching for Tina, Austin's mom, as I know the path she must now travel.

Hurting tonight for Austin's family and Colby's family...And forever missing Janie,
Janet

Look at past journal entries

Wednesday, June 11, 2003 10:50 PM CDT

Wanted you all to know one of our little buddies is fighting tonight. We ask for prayers for Colby Cole. Please visit his family at:
www.caringbridge.org/pa/colby

This past weekend Dan and the children and I went to Fairhope, Alabama for Austin Baker's visitation. What a beautiful tribute to a beautiful little boy. Austin was born just a few weeks before Janie. They both lived too short of a life and with way too much pain. But one thing is for certain...they were both showered with love during their short earthly life. My heart is aching for Tina, Austin's mom, as I know the path she must now travel.

Hurting tonight for Austin's family and Colby's family...And forever missing Janie,
Janet

Friday, June 6, 2003 11:08 PM CDT

Back on February 3rd, 2003, I wrote an entry for caringbridge. It was, of course, how I missed Janie. But it was also about room 659...the room she entered for her stem cell transplant...the room she had her last Christmas, her last hugs, her last pain, her last breath. In that February entry, I talked about another mother who was there fighting for her son's life. The mom is Tina, the son, Austin. They were in room 659 ("Janie's Room"). I could imagine them there as she guided us through Austin's journey through his caringbridge page. She signed our guestbook and told us she read the entry and realized she was the mom I had written about. (You can see her guestbook entry she left on Feb 4th.)Since then, we have hung on every word...and the word today is that Austin went to be with our Savior in Heaven.

I can't tell you how hard these kids fight. I can't begin to relay their pain. I am so broken up for yet again, another family who must forever miss their son, friend, companion...and their hero. Please, pray for this family so they can have strength to get through the next few days as they make arrangements. Let's pray for them to find peace in the days to come.

Visit them at:
www.caringbridge.org/al/austin

Forever missing Janie,
Janet

****Update Saturday, June 7, 2003****
We lost another boy to leukemia today. At 1:35 a.m. Visit his site at:
www.caringbridge.org/mo/jacob

Tuesday, June 3, 2003 8:26 PM CDT

Dan and I got out for a little while the other night. My nephew Austin babysat...although he may never want to ever again....

When we got home, Austin was digging the Cheerio's out of his shoes after the kids had filled them to the rim. (So much for breakfast the next morning.) He had a look of relief on his face when I unlocked the front door and told him he could go home. I still don't know all the horror my children put him through but I will say I found Daniel's trophy and Haley's school notebook in the refrigerator. No one claims to know who did this or why they felt these items needed to be cooled off.

We have been surviving (I think) since the kids got out of school. The first day we were out, I took them swimming. But after only 2 1/2 hours, Haley had already called Dan and moaned that she was bored and wanted him to leave work to come swimming with her. That really frightened me...I'm looking at several, non-school weeks with a pouty, bored, very pre-teen, female. AHHHHHHH!!!!

The girls have taken on a summer job...they are walking a neighbor's dog every day. Yesterday went fine, but today we had to walk the dog in the rain. During the walk, Anna stepped in a fire ant bed and screamed so loud the fire ants ran away all by themselves. She has several good spots on her legs that I'm sure are very itchy. When I picked up her shoes, they were crawling with fire ants and I got a few good bites myself.

The boys had their 5 year old booster shots today. Daniel has been worried about this for about a week. David was not worried. Luckily, Dan was able to go with us after his day got rained out on the construction site. I had to hold a very frightened Daniel and Dan took care of the others until we were called back.

At this point, I felt so sorry for both of them. After they saw Janie go through so much, the boys can't help but relate their doctor's visits with hers. They were asking questions like "Am I going to have surgery???" and "Are they going to leave the needle in??" I'm assuming that one came from the many times they saw Janie's port accessed. It broke my heart to see their anxiety and fear.

David was the first to get the shots...2 in one leg and 1 in the other. Daniel watched, cried, and reached out and held David. They were screaming so loud that Dan heard from the waiting room and rushed to the exam room. He immediately took David and consoled him while I held Daniel down. Over his screams I tried to soothe him by cradling him and telling him over and over..."It'll be over soon. Mommy's here..." Boy, how many times did I do this in Janie's ear as she screamed through shots and spinal taps, and accessing her port(...yes, she did get emla cream but it never kept her from being scared and crying.)

We all left the pediatrician's office a little shaken and a little relieved that it was over. I guess all that said, it was good I had an appointment with the grief couselor today. That session went fine....my poor counselor probably had to go to bed early tonight as I'm sure I wore him out with my hour session that I talked non-stop. I did manage to let him speak for about a minute and a half before the session ended. I go back next week.

Nothing remarkable to report on my running...except that I keep doing it. I'll let you know if anything newsworthy pops up.

And last, another leukemia patient died yesterday. I've been keeping up with his site for a while (www.caringbridge.org/page/anthonym ). I'm hurting for the family and wishing I had something really helpful and inspiring to say...but nothing comes to mind...I only know the pain and grief as I wait on the sun to rise again in my life.

All for now.

Forever missing Janie,
Janet

Monday, June 2, 2003 8:40 AM CDT

Wanted to give you a couple of sites to visit. Please lift these children and their families up in prayer.

Margaret Ann Clark, 5 years old, dx ALL,May 2003
from Birmingham, AL
www.caringbridge.org/al/maclark



Jacob, dx ALL April 1999, Relapsed Sept 2002, BMT Dec 2002, Relapsed April 2003, now in PICU
www.caringbridge.org/mo/jacob

Forever missing Janie,
Janet

Wednesday, May 21, 2003 10:54 AM CDT

Sunday, May 25,2003
Pool opened today at Southbury. Janie should be here with us all. She loved swimming. She swam all her life starting when she was about 2 months old. We called her a Fish because it came so naturally to her. I don't remember a summer she didn't swim under water with her big brown eyes wide open. She learned to jump in the deep end when she was 3 and she taught herself to dive in the deep end when she was 4 years old.

Forever missing Janie....
Especially today...
Janet




May 21,2003
Hey everyone. Little update.

Daniel got the game ball last weekend after a great t-ball play. Unfortunately, after about 5 minutes at home, he lost it in the back yard. I spent the next day searching the bushes until I found it. Since then, he has been sleeping with it at night and it is the first thing he looks for in the morning.

David drew on his bedroom wall with a marker and had to spend the afternoon in time out. Don’t worry, he didn’t have to spend that time alone because Daniel was right there with him after he was caught climbing over the fence into the pool area in our back yard.

After their stint in time out, the boys have been helping (and I use that word loosely) our friend and neighbor (Susan) as she gets her flowerbed ready for summer flowers. The boys have had fun helping dig out the weeds and pulling out the worms. But I don’t think Susan thought it was a bit funny when she found they had taken weeds from my garden and replanted them in her flowerbed!

The girls are fine. Anna had her gymnastics recital last Saturday and she did wonderful. No more gymnastics again until next year. Haley has one more art class and then she will be done with that for now. Both Haley and Anna were excited to show us their yearbook from Vestavia Hills Elementary West. The school had dedicated a page to Janie. A beautiful picture taken by a local photographer and friend (Kim Schnell) was used. We thank the school and Kim for a beautiful memorial to Janie.

Running update. I met my sister Karen a couple of days last week to run at 5:45 a.m. YES! I said A.M….I still can’t believe I got up that early, drove across town, was able to speak AND run for 4-5 miles. (Do you know how hard it is to keep the coffee from sloshing out of the cup when you are running??) Anyway, each morning I showed up, Karen spent the first 15 minutes LAUGHING! If you know us, you know that she is a morning person and I’m a total night owl. When she saw me up and walking around at that time of the morning, well, I thought she was going to wet her pants from laughing so hard.

Anyway, I was very glad to find out Karen was going OUT OF TOWN last weekend! YES! I was going to sleep in!! But believe it or not, I actually did a run anyway. I did 6 miles in Mountain Brook on Sunday even though the heavy rains we have had coated the entire trail with mud and I felt like I was on an obstacle course as I jumped over puddles and mud patches. I was pretty dirty by the time I finished.

All for now. Don’t forget to continue praying for the children who are fighting cancer today and for the ones who will be diagnosed tomorrow.

Forever missing Janie,
Janet

Thursday, May 15, 2003 3:17 PM CDT

Hey everyone,

To answer my own question in my last update.... "Tomorrow will be better...right???" The answer is Yes. I know I had quite a few of you worried and you had me on a suicide watch!! But most of you knew there was no getting around the tremendous pain I was going to face on Mother's Day. Two things got me through...Prayer and Faith.

Now, something I need to go over with the Birmingham area readers....I got an email from one of the Team in Training guys today. He forwarded some information about a family here that has just recently found out their little girl has leukemia (ALL). Please read the following email below and see if you can help with her need for A neg blood or O neg blood....
_______________________________________________________
Jill and David Clark are requesting your help with blood donations for their soon to be 5 year old daughter Margaret Anne. Margaret Anne was diagnosed with Leukemia (ALL ) on Monday and has been requiring blood transfusions.
Her blood type is very rare, A negative. If you are willing to donate and have Type A negative or Type O negative blood please contact her Aunt, Janet Anderson at janbrian@bellsouth.net

You can donate at LifeSouth in Homewood 943-6000 or the Red Cross in Southside 918-1000. Please make sure the blood is tagged for Margaret Anne Clark.
Thank you for your help.
Jennifer Poirier
_________________________________________________________

Let's start praying for this family. Let's make sure this little girl gets through this, grows up and lives a long, beautiful life.

Forever missing Janie,
Janet Sims

Sunday, May 11, 2003 3:38 PM CDT

I woke up today to Haley, Anna, David and Daniel coming into my bedroom with a big sign..."Happy Mother's Day!" They all signed it and taped pennies and dimes all over it. I already have an armload of gifts they made me in school and I will treasure them. But we all know what I was thinking...if only janie were here....This time last Mother's Day, we were hiking Peavine Falls at Oak Mt. All five of my children were standing under a beautiful waterfall and giggling in a crystal clear pool of water at the base of the falls. I don't have one picture to share with you...they are all in my heart.

Then, somehow I managed to go to church today. I wore my white corsage to recognize my mother was gone. Haley and Anna wore red because I am still living.

During the service, I was numb but I felt the tears stream slowly down my cheeks. It was so odd that I felt almost nothing but my tears were way ahead of me. The sadness was flowing out of me.

This afternoon, I went to the cemetery alone. And in the pouring rain, I talked to Janie. I talked to God. I really wanted to be strong. I wanted to be at peace. But, I stood there in the rain and asked God to bring me Home...just like I had done the day Janie died. But so far, it is not my time. So, I took the white corsage I had worn in church, and I placed it on my daughter's grave.

Tomorrow will be better...won't it?

Forever missing Janie,
Janet

To Alison, Pama, Ruthie, and all the other grieving moms....I hope you did better today than I did. Thinking of you all...Hurting with you as we miss our babies today.

Tuesday, May 6, 2003 12:51 AM CDT

This morning, I attended the Mother's Day program for the first grade at VHEW. Anna and her class sang to all the moms, gave us bunches of sweet artwork, and served us lots of goodies to eat. When it was over, Anna and I hugged and kissed. She was beaming with smiles and was so giggly. Then....as I left the school, I had to pass Mrs. Elkins' Kindergarten class...Janie's class.

Janie only attended school for a few days before she relapsed in September. But every time I go to that school, my mind is flooded with memories....Walking Janie to class her very first day....Seeing her on the sidewalk at the end of the day when I picked her up....And her last day of school, seeing her sitting in a little chair just inside the front office when they called to tell me to come pick her up because she was too tired to stay in class. All the memories were too much. I was ready to leave and go home.

But when I got home, I read an email that really sent me over the emotional edge. A local 16 year old young lady, Deanna Garner, died this morning after complications from her A.L.L. and bone marrow transplant. This morning, as I was sipping Orange Juice with my beautiful little girl Anna, another mother was saying good-bye to her beautiful little girl.

We knew Deanna. Janie and I met this young woman when Janie was first diagnosed. Deanna had the same form of Leukemia...You know the one...A.L.L.- the most treatable, most curable of leukemia. (little sarcasm, sorry.)

I am so sad. Another child gone. Yes, pain free...but very gone. Please pray for this family. Her website is www.caringbridge.org/al/deannagarner.
Sweet Deanna. We will miss you.

Forever missing Janie,
Janet Sims

Tuesday, April 29, 2003 2:16 PM CDT

3 Days and 18 Advil later......

Okay, it has been 3 days since I ran 13.1 miles and I have finally gotten the energy to type. You might want to get some coffee or a Mountain Dew to get through this update ‘cause it’s a long one!

My sister (Karen) and I left B’ham Friday afternoon despite my major “Mommy Guilt”. By the time we hit I-65 I was over it and started to chill out.

That night, we went directly to the Spaghetti Factory in Nashville to do some “Carbo Loading.” Evidently this is a tradition for runners the night before the marathon….a last effort to stuff your body with lots of energy-packed pasta. I totally didn’t understand all the hype about this…The way I see it, I’ve been “Carbo Loading” for YEARS and these skinny little runners were obviously amateurs in this area of training! In fact, I think this was the only part of this whole experience that I was actually prepared for!

When we got back to our beautiful hotel room, we set 2 alarm clocks, called for a wake up call, and set the cell phone to go off at 5a.m. After all we had gone through, we were determined NOT to accidentally sleep through the marathon. Then, I was so happy to slip into a big fluffy bed with NO cracker crumbs, Barbie Dolls or bologna sandwiches to roll over on. No little bodies climbed in with me and wet the bed and no one woke me up to tell me they saw a monster in the closet. At that moment, I sure missed my little babies, but I got over it and spent a few minutes giggling with Karen, just like we had done when we shared a bedroom 30 years ago.

When we woke the next morning, we quickly dressed and went through our checklist: EAT, drink a little coffee, take Sudafed, take Advil, put on sunscreen (I sunburn even at 7am), pin on our race number, pin pictures of Janie to our shirt for inspiration….

We walked from our hotel to the start of the race. THOUSANDS of people from all over the world were crowded on the Nashville streets. We shuffled through the masses to find our “corral.” Runners of similar expected finish times were roped off on the street. Corral was the appropriate name for it as I soon felt like cattle awaiting an uncertain future. I fidgeted around as the 7a.m. start time approached. I tied and re-tied my shoes over and over…getting them too loose, then too tight. Finally the corral was so full that we were all touching and I didn’t even have room to bend over again. The shoelaces would have to stay too tight for now. Then the butterflies in my tummy started flapping hard and trying to get out. I had a last minute panic that I should have taken one last port-a-potty break before the gun went off.

But it was too late. The race began not caring about my bladder or my panic.

12,000 runners were barreling down West End Avenue. I was one of them. I didn’t know whether to laugh or cry or wet my pants!


Miles 1-7…..Doing fine! Running 11 minute miles. Bands along the way pepped us up and the cheerleaders along the route cheered us on.

Miles 8-10…..I was technically running but the “Walking” marathoners were passing me. No time to stop for a porta-potty break.

Mile 11….Didn’t need to tinkle anymore…I think my bladder fell out around the 8 mile marker.

Mile 12….Seriously considered hopping on Karen’s back and riding piggy back the rest of the way. I didn’t think she’d mind as she still hadn’t birthed one sweat bead on her body.

Mile 13…Will this NEVER END?? Who measured this %#@& route anyway??? I didn’t know an entire course could be UP HILL.

Mile 13+….We were almost done. Just yards to go. Karen leaned in to me and said “Let’s sprint in!”
Was she insane?? “SPRINT?” I grunted… “Are you #@&% CRAZY??”

But when I saw that line, and Karen was a few steps in front of me, I dug deep inside my fat, sweaty body and mustered up my last teaspoon of willpower to RUN faster. By golly I had trained hard and that toothpick was not going to be one second ahead of me! (Just a little old sibling rivalry left in me.)

So I got right next to Karen. I grabbed her hand and as we ran under that FINISH line together, our hands and arms were raised in unison, in victory, as we finished the race we had sought to conquer. 13.1 miles. Running non-stop. We finished in 2 hours, 51 minutes and 4 seconds.

I CRIED. I LAUGHED. I…almost threw up…

But no time to throw up…Karen kept pulling me up saying “Come on!”
I thought “Wait a minute… I just ran 13.1 miles. HELLO! Can I catch my breath you little sweat-free freak??? Remember, just one karate chop…

But she had a secret. Right around the corner that she was coaxing me around, I saw a man. A tall, gray haired man with a big smile. He was there to say “I saw you cross the finish line! I am so proud! !” It was my dad. He and his wife had driven from east Tennessee to see us cross the finish line. My whole family had kept it a secret from me. I think it is the first secret that the Burney’s have ever kept.

As I collapsed in my father’s arms and cried like I did when I was a little girl, I felt like….I felt like….a Runner. I felt weak and strong at the same time….my body weak and shaking from the event I had put it through…and my spirit strong from the exact same ordeal. I thought of Janie. My baby. In her last few weeks on earth, her leukemia-her journey- had made her body weak, but the same journey had made her spirit stronger…so strong that it broke free and let her soar straight to her heavenly Father’s arms.

That day, I felt the spirit of Janie as she watched over me. She understands all the many reasons I put myself through this test.

When I returned to Birmingham the next day, I quickly flipped the computer on and began checking all the sick children I follow on caringbridge. One of the little boys I check on had died while I was gone. A sweet little boy who died of leukemia. A family devastated. A body too disease ridden, but a spirit so strong it soared on angel’s wings.

Last night, I signed up to run for Team in Training to raise money for the Leukemia & Lymphoma Society. This time, I’ll run 26.2 miles in Washington D.C. in the Marine Corps Marathon on October 26th. Janie will be with me. As always, she will be my inspiration, my motivation, my Princess…

But for now…a BIG THANK YOU….to my sister Karen- for training me, for encouraging me, for not leaving me in the dust even though she could have finished in under 2 hours…she stayed with me to the finish line.
A BIG THANK YOU to my sister Bonnye….who stayed back in B’ham to care for Haley, Anna, Daniel and David. I think your weekend was lots harder than mine!!
A BIG THANK YOU to my sister Lisa in Arkansas…who always sent me emails encouraging me right at the most critical times. She doesn’t even know that times I wanted to quit, she provided the loving words that made me continue training.
And to my Dad…who is battling kidney cancer, thank you for being proud and telling every stranger we came across in Nashville “These are my daughters…They just finished the Half Marathon!”

Gotta “run.”

Forever Missing Janie,
Janet

Sunday, April 27, 2003 5:26 PM CDT

Monday, April 28, 2003

Waiting on the Country Music Marathon update??? While you are waiting, click on the link below (additional page for Janie). On that home page click on "Favorites" to get info (and registration form) on the 2nd annual Buck Creek Festival that is held in Helena, AL. They are having a 5K run on May 10th and all the proceeds benefit the Leukemia & Lymphoma Society. You can walk it or run it! The early registration (before May 2nd) is only $15. The rest of the festival benefits the Make A Wish Foundation. Please
attend if you can!!
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Sunday, April 27, 2003
BACK FROM NASHVILLE!!! Will update in a couple of days!
Janet

Wednesday, April 23, 2003 4:32 PM CDT

First, a Running update: On Friday, I will be leaving for Nashville for the Country Music ½ Marathon. I’m excited and nervous! What if I pass out? What if I trip on my shoelaces? What if I trip on someone else’s shoelaces?? OH the anxiety!

My goal is to cross the finish line...even if I have to cry and crawl. I’m doing this ½ marathon to see if I can do it and hopefully feel better about doing a full marathon this fall for the Leukemia and Lymphoma Society. So, my fingers are crossed!!!

If you want to read more about the marathon, go to: http://www.cmmarathon.com/


Now, time for a belated Easter update:

Last Saturday we had our annual Easter Egg hunt for Southbury. My neighbor and friend, Susan, and I hid the eggs for a rowdy bunch of kids. At the end of the hunt, we realized that all the eggs were not found yet. The problem is that Susan and I can’t remember where we hid the missing eggs! So much for our aging memories! Oh well...we’ll just let the lawn mowers find them just like we have for the past few years.

I hope you all had a wonderful Easter as we celebrated the resurrection of Christ. Besides Janie’s birthday, this was our first big holiday without my baby girl. I cried on the way to church. I cried in church. Church was packed, and we sat on the first pew...the same pew we sat on at Janie’s funeral service. I cried that afternoon as we all went to the cemetary. David and I sat beside her grave. I held him and thanked him for loving Janie so much and helping her with the transplant. I will never be able to thank him enough for giving so much of himself without even complaining one time. I think often of his pain and his sacrifice as he helped his sister. He is so young and I pray he will have memories of Janie and their special connection.

For Easter, I wanted to put the perfect scripture on Janie’s webpage. And I kept coming back to John 3:16. There is a reason it is so well known. It is short, concise, and goes right to the point...For God so loved the world that he gave his only Son, that whoever believes in him should not perish but have eternal life.

It really is pretty simple...Believe. The rest just falls into place.

Forever missing Janie,
Janet

Tuesday, April 15, 2003 9:49 AM CDT

**Check New Pictures in Photo Section***
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There has been a little rumor going around about me lately. They say I have been spotted jogging in Alabama. Well, I’m no stranger to rumors...back in 1993 there was a nasty little rumor that I was also seen playing tennis. I can neither confirm nor deny that one at this critical juncture.

But back to the jogging...Yes! It is me. I can’t deny it anymore.

How did they know it was me? Well, besides going at a snail’s pace and my fat jiggles setting off a few car alarms, it was reported that I was seen being passed by a lady pushing a double stroller and a senior citizen walking his poodle. Apparently, the lady and the senior were questioned at the 1 mile marker and confirmed all the huffing and puffing was coming from a fat,white girl wearing a Children’s Hospital T-shirt and M&M’s falling out of her shorts. I’M SO BUSTED!

Hey, I admitted I was jogging...I didn’t say it was pretty.

Okay, here’s the scoop. Yes, after years of making fun of my skinny, sister Karen who runs, I have joined the ranks of women joggers. My goal is to eventually run a full marathon (yes, 26 miles!) to raise money and awareness for the Leukemia & Lymphoma Society. I have been hesitant to tell anyone for fear of 1.)failure, which is still a big possibility! And 2.) Losing my almost 40 year stretch of avoiding exercise (To the RCHS PE teachers, I hate to break it to you, but I really didn’t have cramps every Tuesday and Thursday of my freshman year. But thanks for believing me anyway.)

I started training about the end of January and I needed some focus in my life. Karen swooped in during a weak moment and handed me a running schedule. It is called the Fat Burning Plan....Although, I still swear she slipped and called it the Fat “Burney” Plan---only funny if you know my maiden name is Burney. Anyway, Karen, I always say she’s so skinny I could snap her little toothpick body in two pieces with one karate chop. All I know is that she better watch out on our long 15 mile runs through the wooded areas. She better not be too perky... and more than that, it wouldn’t hurt if she could actually muster up some sweat beads a little when we ran together. I mean, can’t she even fake some sweat to make her sister feel a bit better?? Man, I could give her one fat jiggle that would knock her right off the trail before she could say “Runners High” one more time.

So, I’m trying the running thing and I couldn’t do it without my sister Toothpick...er...I mean Karen. We are headed for Nashville, Tn for the Country Music ½ marathon in a couple of weeks to see if I can survive that. Look for me on the local news...they’ll probably say something like: “Marathon runner collapses 1 yard from the finish line....Drags sister down, too. World’s nastiest sibling rivalry pictures at 11.”

All kidding aside, no, I’m not a natural runner and it is very hard and painful...But nothing compared to how hard it was for Janie to endure 15 months of needles, surgeries, spinal taps, bone marrow aspirations, CT scans, radiation, steroids, chemo, long hospitalizations, long hours in the Clinic, etc. No pain I will ever endure on a long, hot run will ever come close to what brave, sick children face every day. When I get finished with a run, I get to go home and rest from the pain. Janie was in pain round the clock during her last month of her life. So...I will train for a marathon to benefit the Leukemia & Lymphoma Society. We are so close to “curing” leukemia, but we are not there yet. Remember, Janie died from the “Most Curable Childhood Leukemia.” Until they call it 100% curable, we can’t give up.

I’ll keep you posted as to how my training is going. Until then....

Forever missing Janie,
Janet

Thursday, April 10, 2003 12:24 AM CDT

Hey everyone. Time for an update.

Things are going well and we wanted to let you know how the family is doing.

Haley won first place in the Dogwood Festival art contest for second grade at her school. We are so proud of her! She was presented with her blue ribbon and presents from the mayor of Vestavia Hills last Saturday. She won first place last year in this contest and placed 2nd when she was in Kindergarten. I hope to have a picture of her from this year’s ceremony posted soon.

Remember a while back when I said Anna was going to be doing something different?? Well, she was thrilled to learn that she is going to be a Little Rebel Cheerleader this fall for one of the Vestavia Hills football teams. GO ANNA! I think she will do great since she has been taking gymnastics for a while and seems to be a natural tumbler! We picked up her uniforms last weekend and she has tried them on over and over!

David and Daniel are loving baseball...Sometimes they dress for their game 2 hours too early and then sit around asking “Is it time yet??”

The boys haven’t been in too much trouble lately. The last big thing Daniel did was stand on our deck and throw his school bag into a huge tree in our back yard. (Why do boys do stuff like this???). I had to teeter on the railing with a broomstick and free the bag from the limbs. Later, David left his shoes outside for the rainstorm that night. The shoes are still drying.

I give the time-outs, give the lectures, threaten them until I’m blue in the face...but underneath it all, I relish the chaos, the normalcy of mischievous twins. I thank God for Haley, Anna, Daniel and David. I cherish their lives.

I know those of you who have not lost a child wonder how we get through the days. I wonder too as I read the webpages of parents like us. After following many parents who have lost a child, it still amazes me how throughout all the enormous pain we share, we are very diverse in dealing with that pain. After her child’s death, one woman quickly cleaned her child’s room and packed away all her belongings. One created a shrine in a bedroom. Some parents seek comfort in their child’s gravesite while others have never gone since the funeral. Some parents become extremely active in organizations like the Leukemia/Lymphoma Society...others lock themselves away from the world.

All this made me realize one thing...none of us are grieving the right way and none are grieving the wrong way. We mourning parents all trying to eek out a little peace, find a happy moment, capture something to smile about. The gut wrenching pain is still in us all.

So how do the Sims deal?? If I had my choice, I’d go to bed and never return. But I seem to just keep stumbling through the days. We have packed some of Janie’s things away simply because we want to protect them from little hands. Some of Janie’s things are still hanging around the house just as she left them. (All her school work and supplies from when I home schooled her are still untouched.) Most of Janie’s personal belongings from the Hospital are still at our friend, Susan’s condo...I just don’t seem to have the strength to go through it yet

For now, we need to keep things right where they are. Janie’s bed is still right beside mine and Dan’s bed. There are pictures of her on the refrigerator and her artwork hanging on the cabinet doors. Her snack schedule and field trip schedule from Mrs. Elkins Kindergarten class that I hung last September still hangs right beside the other kids schedules.

Sometimes I see Janie’s toys and clothes, pictures and artwork, and I draw tremendous comfort. Sometimes I pass quickly by them because the pain is too enormous. Sometimes I want to be flooded with memories and sometimes I wish for a moment I could forget her last painful days. My sweet Janie.

For those of you lately who have seen Dan and asked if he is sick (because of the hospital bracelet he wears), he is okay. He put on the hospital bracelet that identified us as Janie’s parents when she was last admitted on December 11th. He continues to wear it as it gives him comfort and a connection to our child. He may remove it one day, but only when he is ready.

So every day we get through. Some days better than others, but always with our faith in Jesus intact.

Forever missing Janie,
Janet

Wednesday, April 2, 2003 3:29 PM CST

For the Birmingham area readers:

I wanted to let our local readers know that a group (Circle 5) from Vestavia United Methodist Church has an upcoming fundraiser that you might be interested in. They will be selling 2 different types of casseroles:
-Hamburger Noodle -- Hamburger, tomato sauce, garlic, sour cream, cream cheese, and cheddar cheese (obviously not a low-fat option :) )
-Chicken Spaghetti -- Chicken, cheese, spaghetti, mushrooms, etc.........

To place your order, you can call Tammy Holston at 970-9724 or Shannon Andrews at 822-9859. They can tell you how to get your payment to them or you can take your payment to the church office and leave it in the envelopes we have marked casseroles. Orders need to be placed by Monday, April 7th.
Casseroles are $15 (make checks out to VHUMC) and they can be picked up on April 12th at the church.

The money raised will go to:
-The Janie Sims Children’s Foundation and will be used to benefit Clinic 5 (the Pediatric Hematology and Oncology department of Children’s Hospital, Birmingham, Alabama) . See below for info on Clinic 5.
-The Cystic Fibrosis Foundation in honor of Maddie Hagler. A little girl fighting this disease.



Info about Clinic 5:

In 2001, the Pediatric Hematology/Oncology Division provided care to:

 140 newly diagnosed children with cancer
 nearly 1000 total children with cancer previously treated and currently followed
 800 patients with Sickle Cell Disease
 55 children with Sickle Cell Disease who require monthly transfusions
 190 children and adults with Hemophilia and other bleeding disorders



The current nine room, seven bed infusion area clinic of 2500 square feet served this population with 12,000 clinic visits last year.

The new Children’s Cancer and Blood Disorders Clinic due for completion in 2003 will more than triple the available space, increase the number of clinic rooms to 18-20, and the number of infusion/transfusion beds to 14. In addition, the new Children’s Cancer and Blood Disorders Clinic will provide wireless computer access for electronic medical record use, provide age specific play and educational areas for the children in the waiting room and infusion areas and allow supervised sedation in the clinic area for all painful procedures.

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I'm sure you all remember the many, many visits Janie had to Clinic 5. They were very long days. We are happy that Clinic 5 is expanding and that we all can help in making those clinic visits for other sick children as comfortable as possible. We will be even happier when one day, there will no longer be a need for Clinic 5. But until then.....thank you for helping us support their expansion.

Forever missing Janie,
Janet

Wednesday, March 19, 2003 10:29 AM CST

MARCH 19, 2003

Today, as the entire world sits perched ready for war, we are quietly reflecting on Janie’s memory and what would have been her 6th birthday. Haley, Anna, Daniel and David have selected gifts for her and we will take them to her graveside this afternoon. Dan and I have selected the headstone and footstone for Janie. We’ll let you know when it is placed at the cemetery.

We felt today was the best day to tell you that in celebration of Janie’s life, we would like to introduce you to The Janie Sims Children’s Foundation. It is a non profit organization to help other children and other families. Throughout the 15 months that Janie endured treatment, countless people and organizations came to help us in so many different ways. It is now time for us to honor all of you that helped us and to honor the life of Janie. We will tell you more about the Foundation soon.

Yesterday, I sat to reflect on Janie. With all my children on their birthday, I would tell them about how they came into our family...from finding out I was pregnant to present day...I would tell them about their life. So with Janie, I wanted to do the same. I sat at the computer and what was intended to be a few short paragraphs turned into several pages. The memories just flowed along with the tears. Below is the lengthy story of Janie...from the pregnancy test telling us her life would soon be with us, to the last words spoken and her last breath telling us her life was returning to God.

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I remember the night I found out I was pregnant with Janie. Dan was upstairs trying to get Haley and Anna to sleep. I snuck into the bathroom downstairs, nervously opened a home pregnancy test, and held my breath. After a minute or so, I got up the courage to peak at the little stick still laying on the edge of the sink. I got closer and closer until I could see a faint, very faint, blue line in the center of the stick’s window.

“DAN!!” I screamed. Then I ran upstairs. The girls were not asleep like I hoped but I told Dan he had to come downstairs immediately. Dan’s not usually sensitive to my facial expressions and tone of voice when I’m trying to convey something private...but thankfully that night, he did. We snuck away from the girls and quietly went downstairs.

I got my pregnancy stick and stuck it in his face. “What do you see??” I said frantically. “What??WHAT??”

He examined it and said, “I think I see a purple line.”

“Purple??? It doesn’t say anything about purple on the box!” I grabbed the instructions and poured over them. Nothing about purple.

“Look at it again.” I demanded.
“Well...maybe it looks...pink.”
“OH, DAN, you are no help at all!!”

I left him holding a stick with a possible blue, purple or pink line...and I went upstairs to check on Haley and Anna.

When I got to my room I saw them sleeping in my bed. Haley was only 1 year and 10 months old. Anna was 6 months old. And according to my blue/purple/pink stick, I was pregnant again. I was happy and scared. Dan and I had planned on another baby, but as always, we were just so surprised at how quickly it happened.

If my pregnancy with Janie was any indication of how she would be, then it was right on target. The pregnancy was easy, the delivery was easier than the previous two, and the recuperation was easy. She came home without any problems and fit like a perfect piece in a puzzle as we welcomed her into the family.

Haley and Anna treated her like a baby doll. Despite their young age, they learned to help change their little sister’s diaper, retrieve a pacifier, hold a bottle, turn the swing to ‘on’. The older Janie got, the more she played with her sisters. When she was old enough to sit up, she would take baths with Haley and Anna. They practiced swimming moves, shampooed each other’s hair, and made Santa Claus beards from the bath bubbles.

During the day when Haley and Anna went to Mother’s Day Out, Janie and I would spend quiet moments at home. I videotaped her first taste of solid foods, her first smiles, her first steps. We took long walks in the neighborhood and I pushed her in the swing for hours and hours.

Then, when she was 9 months old, I found out I was pregnant again. When she was 13 months old, I found out I was carrying twins. I was no longer allowed to pick up her or her sisters. Dan would have to pick Janie up for me and set her beside me. Then, like her sisters, she learned to climb like you wouldn’t believe to be with me in bed or up on the couch.

At nighttime Dan would get her in the crib and I would stand beside her and rub her back as she fell asleep. In the mornings I would go in to get her out of the crib and would many times find Haley or Anna in the crib with her.

When Janie was 15 months old, I had to go into hospital when I went into early labor with the twins. Dan had to be mommy and daddy for the girls, but I never worried they would have any trouble with that.

Shortly after midnight on the 4th of July, I went into active, no-turning –back labor. The boys were born almost 10 weeks early and were less than 4 pounds each. The pregnancy had been difficult, the labor hard, delivery was painful as they were born almost an hour apart. Though they spent quite a bit of time in the hospital, they did great.

My 5 little children, ages 3,2,1, and newborn twins, were the love of mine and Dan’s life. We struggled through the rough days, laughed on the easy days, got very little sleep at night, and knew God had blessed us in a very special way.

And as soon as we blinked our eyes, Haley was in 1st grade, Anna was in Kindergarten, Janie was in 4K and the twins were in preschool. I was able to have a few hours a day to myself...which was better than if anyone had said I won the lottery.

Little did I know that just weeks into the school year of 2001 that Janie would be diagnosed with leukemia.

What happened? Had I not spent the last number of years tending to all my children’s well being? Had I not meticulously chosen the right food groups, avoiding too many sweets? Had I not watched them vigilantly as they played outside? Had I inadvertently exposed my babies to something that would cause cancer?

Like so many parents I know, Dan and I cared for our children with undying commitment. And though we will never know why Janie got leukemia, we will forever question how we could have done all the things the expert books tell us will render a happy, healthy, well-adjusted child...and then find out that one of them has cancer.

So, we cried. We were scared. And then we turned to the doctors and asked, “What do we do to make her better?”

For 11 months we tended to her every need. For those months, she had surgery to insert a port, she had countless spinal taps, X-rays, bone marrow aspirations, doctors visits that lasted hours, arm sticks, finger sticks. She had chemo put in her port, in her mouth, stuck in her leg. Some chemo would go in fast. Others had to be infused in and monitored in the hospital. It was hell for her to receive.... and as a parent, it was hell to watch. But with each pill taken, with each chemo given, we were suppose to be one step closer to being cured.

Then September 11, 2002. We had been home for a few weeks from our magical Wish trip to Disney World. Janie had just started Kindergarten. She had three best girl friends she loved. She had 2 sisters and 2 brothers who had adjusted their lives lovingly to assist Janie’s treatments. Surely she wasn’t relapsing. But I was uncomfortable when I noticed she was tired. Her heart rate was a little too fast. I laid all 5 of my kids on my bedroom floor and compared them all to Janie. In comparison, Janie’s gums looked too pale. I counted 7 bruises on her legs. Then, the most telltale symptom...night sweats.

I called Pat Cotton, our nurse practitioner and told her I didn’t need a test to tell me. I already knew. We went in the hospital the next day

...September 11th. Janie relapsed only 11 months into treatment. It looked bad, but there was still hope. I held Janie in my lap as Dr. Berkow and Pat Cotton told us that the leukemia was back and it was aggressive.

Still in shock, we began a 4 month, frantic, hysterical rush to save her life. Besides taking care of all our children, everything else took a back seat.

Janie had more surgery, more spinal taps, more bone marrow aspirations, more hospitalizations. She had leg shots, steroids, chemo in her mouth and in her port. She had CT scans, Ultrasounds, and lots of tests to monitor her heart. Her bones hurt, her stomach was upset, she was cranky and hungry from the dexamethasone, she was losing her hair by the handful. She wasn’t allowed to take overflowing bubble baths with her sisters anymore and make Santa Claus beards because of the tube sticking out of her chest couldn’t get wet.

But somehow, through it all, Janie was happy.

One day, she was standing at the top of our staircase. She was wearing her favorite sparkly flair jeans and a sparkly shirt that I could see her Hickman catheter tubing underneath...and she was just standing there smiling.

“Janie,”I said, “You are the happiest little sick girl I know! How come?”

She just giggled and said, “I don’t know! I just am!”

I left it at that. I tried to tap into her happiness. I could for short periods of time. I would feel it when she and I would sneak off to Arby’s for a roast beef. I would feel it when she held my hand in the car on the way to the hospital. I would feel it when we raided all the vending machines close to the clinic. How thankful I am that her happiness was contagious.

But no matter how happy we tried to be every day, time was marching on. Janie kept slipping out of remission. Soon, no more remissions were to be.

December 10th, 2002. Dr. Sande, one of the transplant doctors called. The leukemia had already grown out of control in the bone marrow and was spilling over into the bloodstream. Janie would not make it to Christmas if we didn’t attempt a transplant. Even then, we knew our chances were so extremely low. We were told she would more than likely die of a post transplant complication. But we could not give up. Dan and I would have easily laid down our own life for that of Janie’s.

Janie entered the hospital for her last visit on December 11th, 2002. Room 659. For the next few weeks, Dan and I worked tirelessly to put a smile on her face. Any toy, any food, anything she asked for was given to her. I remember one particularly rough radiation session we told her if she could just get through it, we would get her anything she wanted. What did she want? A Kenny Chesney CD.

I made one phone call to our group of loving moms waiting to help in any capacity. An hour later, a Kenny Chesney CD was waiting on us in our room when we returned.

In the evening, while Dan was at home playing with our other children, I would give Janie her bath. What a sweet moment. I was able to remove my gloves we were required to wear. While I would run a few inches of warm water in the hospital bathtub, I would wrap Janie’s chest tubing up in an ACE bandage. I would gently set her in the bath and we got our 4 Disney figurines: Belle, Tinker Bell, Ariel, and Cinderella. Quietly she toyed with the figurines and I gently lathered her body with special soap. Every night I would look at her while she sat in a warm bath and say “Janie, you are so beautiful.” And every night, she would say “Mommy, you always say that.” Then she would smile at me and I would see a little dimple in her cheek.

It was true, though. Had I never known what beauty was before, I knew it then. It was in the form of a bald, bloated, 5 year old girl with tubes running in and out of her body. Through it all, she would smile. Through it all, she would laugh.Oh, God..through it all, she taught me that being happy was a state of mind in infinity...happiness was not just for the “good” moments in your life. Happiness is for “ALL” the moments of your life.

On the last night of Janie’s life, I asked her 4 questions. She was having trouble breathing so I asked her yes and no questions.

“Janie,” I whispered, “Are you hurting?”
She shook her head “no.”
“Janie, Are you in pain?”
She shook her head “no.”
“Janie, Are you happy?”
She shook her head “yes.”
Then the last question carried with it the weight of knowing that time was small...“Janie, Are you scared?”
She shook her head “no.”

We had one more short conversation later that night when she told me that she liked the oxygen mask she had on then better than the one she had that morning. I asked her why and she said it was because she could see the TV better with the one she was wearing. It seemed like such mundane conversation as I knew we were hours away from her death. She was so innocent, not knowing I was soaking in every sentence she uttered as I knew soon no more words would be spoken.

Deep into the night, Dan and I held her. He was on her left side, I was on her right side. At one moment when I sat up to rearrange the blanket, I heard her say “I love you.” It was very unlabored and very soft. I almost missed it. But when I heard Dan say “We love you too.” I was reassured my hearing was correct.

Then, as nurses and doctors quietly slipped in and out of the room, Dan and I sang “Jesus Loves Me” to our daughter. She was slipping so far away.

A little after 4 a.m. on January 4th, after such a short, happy life, we asked God to take her from here and end her suffering. I thought of the night I found out I was pregnant with her. I thought of her birth and all the hopes and dreams for her life. And then I thought how those would never be.

As Janie laid on her back and slightly toward me, I rested my right hand upon her stomach, I could feel the rise and fall of her tummy with each breath she breathed. And then...her tummy was still, never to rise and fall again. She was gone. She died at approximately 4:15 a.m. It was Dan’s 45th birthday.

From there, it is a blur. I know eventually the room was full of family members and friends. I know I cried deeply, loudly, from the depths of my own soul. The pain and screaming, far worse than that of labor pains that brings a life into the world. How do you explain the pain that comes from someone being taken out of the world?

I often wonder, if God would have come down 6 years ago and said, “Janet, today you will have a baby girl. You will name her Janie. You will love her very much and she will bring you much joy. But I will give you the option of how long she will live; You can either have her live a long life of 90 years and she will live a life of mediocrity and she will not touch another heart or another life. Or...you can have her for 5 short years and she will touch the hearts of thousands. Thousands of moms and dads will hug their own children more, tell them “I love you” more, and they will talk to me more. Which life do you want her to have?”

I think I would tell God that I wanted her to have a long life of 90 years. I would want her to be with me no matter what. So, I guess that’s why I don’t get to make the big decisions. I know Janie has touched many people I will never know and she never knew either.

Today, she would be 6 years old. She would be having a birthday party. She should be here helping to make the cake, waiting for all the guests to arrive, wondering what her presents will be. She would be happy. Like she always was. Like she is now.

Tonight, Dan and the kids and I will have a birthday cake for her. We will have presents and celebrate her happy, short life. I will remember everything about her from the moment I stood in the little bathroom with that pregnancy stick and saw the blue/purple/pink line. And I will think of her last breath when my hand was laid on her tummy. Somewhere, between that beginning and that end I will try to find that infinite happiness that she possessed in her brief life.

I will end with the words written on a card and attached to a single pink rose that a friend left at my doorstep this morning:

“A tree may live for hundreds of years...but a rose, which blooms for only a short time, brings beauty and joy and perfectly fulfills its purpose. Today, we are celebrating Janie’s life...”

Forever missing Janie…
Janet

Monday, March 17, 2003 11:04 AM CST

In a couple of days, it will be Janie's birthday. I will update again then. But for now, just a quick update on the rest of the family...

The boys had their very first baseball game on Saturday morning. They were so cute in their "clean" jersey and all their baseball outfit. After playing at full speed on the muddy field, their white pants are permanently clay-stained and the cleats have dried up mud in every crevice. They don't care a bit about the laundry woes...they just had a great time at the game...even if they did run to the wrong bases. Daniel made a good catch in the outfield, but his teammates all came and tackled him! Poor Daniel was under a pile of his buddies who obviously got baseball and football confused!!

Haley has been working on a painting she will enter in a local contest. She has entered this competition for the last couple of years...won honorable mention the first year and 1st place last year. It would be nice if she won, but we always emphasize that she enjoy the painting and not the thought of a blue ribbon.

Anna is still enjoying gymnastics. She has learned so much in just a few lessons. She can do one hand cartwheels and she can now get back into standing position from a back bend instead of just collapsing on the ground. Anna has some fun activities coming up that we know about that she doesn't yet! I can't wait to tell her and you about it!! Patience, patience!

The other day the kids were scheduled for grief counseling again at the Amelia Center. We got over there only to hear them say they did not have our appt. on the books! So, we have to reschedule and hope they don't forget us again!! The kids love to go there and I was afraid they would pitch a fit because we had to leave, but they were totally fine with it.

So far with the children, things have been okay. We still want to continue counseling even though we do not see any huge red flags, i.e. bedwetting, tantrums, school problems, etc. I know they are still grieving as we all are. We talk about Janie lots. We watch home videos with her in it and look at pictures with happiness and sadness. Hard to explain the feelings.

Like I said, my plan is to enter another journal on Wednesday, Janie's 6th birthday.

Forever missing Janie,
Janet

Tuesday, March 4, 2003 8:26 AM CST

Two months ago today, we lost Janie.

It seems lately that we are hearing the word "relapse" too many times. Several children I've been keeping up with through CaringBridge have just recently died or relapsed. I know for many parents right now who have children in remission, this is very scary...a terrible nightmare constantly hovering over them. Dan and I had our "terrible" nightmare turn into the "worst" nightmare when we lost Janie exactly 2 months ago today.

To all those parents who are tending to the constant needs of their ill children right now...I need to share with you that not all kids relapse. Not all cancer kids die. A few weeks ago, I received a letter from a young woman from here in Alabama. She said when she was little, she had leukemia. She beat it, grew up and had children. She said she kept up with Janie's story through CaringBridge and it was then that she realized what her parents went through.

After reading that letter, I felt many things. I felt jealous that this woman had survived what my child couldn't. I felt joyous that this woman survived and was able to have all the things that mothers want for their children. And after hearing every day about another cancer child dying or relapsing, this woman's story gave me hope for all the other children we are all praying for.

And lastly, a little boy who used to live in our neighborhood has been coming over occasionally to play with my children. When I see him running around the backyard and riding bikes, I get that same jealous/joyous feeling. You see, he was diagnosed a few years ago with Neuroblastoma and had a really difficult time. But today, he is in 1st grade and is living and is happy.

So, sometimes when I feel so frustrated at all the bad stories, I have to stop and think of the good stories. They get me through some really dark moments...And my friend, I have had lots of dark moments this last week.

If you have a good story to share...please share!

Forever missing Janie,
Janet

Saturday, February 22, 2003 8:47 PM CST

On January 3rd, when I knew Janie would soon die, I first grieved for Janie and the long life she would never have. I thought of her 6th birthday just around the corner...I thought of her kindergarten class graduating without her...I thought about every “life step” she would miss along the way including her not growing up, getting married, and having children. Then when I couldn’t bear to think of those things any more, my next thought was “Oh God, I can’t go through this pain.”

I had been through pain before. When I was 15 years-old, my mother died. She was at work when she started feeling bad. My dad went to get her, but by the time he got her to the hospital a block away from her office, she was in a coma. She never regained consciousness. No one knew she had a weakened blood vessel in her brain, an aneurysm. It began bleeding and it was inoperable. She lived until the next morning. She died at the age of 44 in an ICU in Knoxville, Tennessee.

My pain was unbearable, but I thought it would get better. I was only 15 and I had never known anyone so close to me die before, so I was under the false impression that life would get better. And it did, for a while. Then it would get worse. For 23 years now I have grieved for her. I turned 16 without her. Graduated from high school without her. Got married and had children without her. Each milestone, however happy, would bring on immense pain. With each milestone in my life I would feel suspended in time as I was trapped between the most wonderful moments of my life and the most grief-filled.

So, when I knew my Janie was going to die, I knew, Oh, God ,I knew what was in store for me. I knew how painful it was to lose my mother...so losing my own child was going to be so much worse. And it has been.

If I had never lost my mother, maybe I would think this pain I am going through now would soon subside...maybe in a year, maybe two. Maybe some unknown, distant day I would wake up and forever and nevermore mourn Janie. But I know that is not true. It is now 23 years and one month since I lost Mom. It is almost 2 months from losing Janie. The pain will never end. I can’t even fool myself into thinking it would end. No, the pain will just change and flow. As I experience new milestones I will again be suspended in time, trapped between joy and grief...

It does give me some ( I mean, a little) comfort to know Janie is now with my mother, her grandmother. Obviously Janie never knew her except through a few faded photographs I showed her and a few stories I told her.

I know I have spent many years being upset that I was never able to say good-bye to my mother. I felt robbed. I told God that if he had let us all be prepared for Mom’s death, I would not have grieved as much. I could have had closure if I had had the chance to say all the things I wanted to say to her and for her to have the chance to say good-bye to me.

...Many years later, God listened to me about needing more time with Janie. I didn’t want her to die suddenly without warning, without our last hugs and kisses, without being held until her last breath. If I were going to lose my daughter, surely he would have mercy on me and make it easier for me this time. He would give me more time to say all the things I needed to say. Then grieving wouldn’t be so bad.

Well, God granted me time to say good-bye...but it really hasn’t helped. I hurt just as bad, just as deep, just as hard.

So now I just have to trust that God will see me through this pain. And since I am always trying to find some sort of comfort, I do gather some peace in knowing my mother was there waiting on my Janie with open arms...There is no doubt...Did I tell you my mother’s name?...Her name is Jane.

Forever missing Janie,
Janet

Tuesday, February 18, 2003 9:37 PM CST

I had a new journal entry to add tonight....But I just couldn't put it in because something else is on my mind. There is a family I have never met (except through Caringbridge) that needs our thoughts and prayers tonight. The Haddock family just lost their precious Alexandria on the 16th. Alexandria's mom and I have been talking via email for a while now. I am hurting for this family's loss. Please visit their website, pray for this family....
www.caringbridge.org/page/alexandriasangels


Forever missing Janie,
Janet

Wednesday, February 12, 2003 9:37 PM CST

The other night Haley and I spent a while on the computer looking up any information on the artist Claude Monet. Not for a project, not for homework...just for fun. She is an aspiring artist....I mean, how many 8 year-olds out there are spending the evening looking at a 19th century French Impressionist?? Just for fun! A couple of weeks ago, Haley finally started art classes after school. She is so excited…especially since she has been asking to take classes for several years now. She finally said she would not do one more season of soccer until she was enrolled in art! What a kid!

Anna, my 7 year-old, has not a single desire for art classes...but she can cartwheel, and back bend all over the house. So she just started gymnastics class last week and loves it.

David and Daniel, my 4-year-old twins will start baseball in a few weeks. I’m really excited for them except for the fact that they will be swinging a bat all over the place. With their wild nature, that’s exactly what they need... a big, blunt instrument...What was I thinking??!

As for me, I spent most of last Saturday getting the kids going to 4 different birthday parties. I've done a little jogging and walking. Then, the other day I made homemade Toll House cookies.

All this sounds like a normal life...right??

Tonight, I got out by myself for a while. I kept thinking about how “normal” it is around our house.

When Dan and I went to our first session of grief counseling, we told our counselor how life had been when Janie was first diagnosed...the chaos, the fear, the running to the ER in the middle of the night....Then we settled into a new normal where chaos still tagged along...there were scheduled hospitalizations, chemo to give, temperatures to take in the middle of the night...Then she relapsed....the new normal with the side of chaos turned into a holy, upside down, shake-us-like-a-snowglobe life. Everything was whirling around us way too fast...we were losing her and nothing else in the entire world mattered. All eyes were focused on Janie and on the moment she left us.

When she left us on January 4th, I wanted all life to stop. Mine...and everybody else’s too. I didn’t want to return to normal.

Our grief counselor made a big statement to us. He said in a lot of families, they lead a normal life, until the loved one dies...then the whole family is in a state of chaos and turmoil. Our family was just the opposite...For 15 months we were in a state of chaos. And when Janie died, our "normal” came back. I have time to bake the cookies. The other kids can do art, and gymnastics, and baseball... I can be the reader in their class. I can go for a walk, read a book, make my own dinners. Normal.

Tonight, when I was out taking that drive thinking about “normal”, I desperately wanted a good old sad song to bring me to the lowest level of crying. But not one tear jerking song came on. Only average, normal songs. No gut wrenching, soul searching song for me. So I didn’t cry. I just went home. I was numb.

Somewhere here I have to accept this life I’m living now. The adjustment is killing me. On one hand, I love all the new activities my children are finally getting to do....but on the other hand, I know the price that was paid to bring our family back to normal. The price was Janie’s life.


Forever missing Janie,
Janet

February 11, 2003 10:12 PM CST

****UPDATED donor info****
Saturn National Donor Day
National Donor Day Blood Drives
February 14th, 11am -6pm

LifeSouth Community Blood Centers will be at Brookwood Mall, near Rich's
AND at Saturn of Birmingham, 3010 Columbiana Road

Please go and donate your blood, all types needed. They can take one extra tube to process and put you on the National Bone Marrow Registry. Please contact Life South at 943-6000 for directions or further info.


Just a short note on our grief counseling. All “6” of us went on the 3rd. The children didn’t really want to go at first...but they loved it. They mostly played and were introduced to everyone.

Dan and I met with a counselor for about 30 minutes. After we talked a little, the counselor looked at us and said, “You two are polar opposites.”

Those of you who know us well are laughing now. Dan and I are very opposite...never quite on the same page of life I guess.

But, we talked about our grief, our pain, our worry for the other children. Our counselor said men and women grieve very differently. I agree. Neither mine or Dan’s way of grieving is better than the other, just different.

I will try to update Caring Bridge again in a few days…
Love, Janet

February 3, 2003 11:33 PM CST

Time is such an odd thing. It has been a million years since I held Janie…and it has been but a moment since I held her. That doesn’t make sense. How can I think about holding Janie and feel those two totally different frames of time? But I do.

Actually, in just a few hours, it will be one month since Janie died. Tonight I spent quite a while reading different Caring Bridge pages...Mostly those pages of children who have died. I start at the oldest journal and read through until the fateful end. I read the logging of the white counts, the platelets, ANC, liver functions, blast count....on and on and on. Parents, like me, who had no medical training will quote with accuracy the type of chemo, or steroid, or antibiotic along with long, technical lab results. Someone far removed from these horrible diseases I’m sure could read these Caring Bridge journals and feel certain that we must have had some medical knowledge before all this…But we haven’t. We learned only because we had no other choice. We became mini-experts because we were trying to save the lives of our children. We had to be able to converse with the hematologists, the cardiologists, the oncologists, the surgeons. And we had very little time to learn the lingo and learn the long words.

See, it is a race against time. We want our babies to hold on long enough for the white count to come back up, the antibiotic to kick in, the antifungal to take effect....just hold on a little longer…just stay with us a little longer...

In Janie’s case, time would stand still, then rush quickly forward as we would scramble for a better chemo or better protocol...only for time to run out. Such a vicious one-way journey as time ever catapulted us to the inevitable...no time left.

Just a couple of days after Janie died, Dan and I went back to Children’s Hospital. We wanted to thank all the nurses and doctors for their tireless efforts. As we stood at the nurses’ station and talked with so many great nurses, I couldn’t help but keep looking at “Janie’s room.” Finally, I asked if I could go in.

I opened the door feeling funny not gloving and gowning up. A nurse went in with me but sensed I needed to be alone and she left. I felt comforted in the room we had lived in for almost a month. As I looked around, I was surprised they had not sterilized the room yet. What a blessing for me that they hadn’t. I felt her with me.

When I walked towards her bed, I noticed the IV pole nearby still hung with the lipids, and antibiotics/antifungals, etc. The bed still had her sheets. The bedside tables still had her dressing change kits, her magic mouthwash, her heating pad, her cough medicine...By the bed was the computer that I would use to update everyone or where Janie and I would go on the internet and check out the “Barbie” website. When I got closer, I noticed the computer was still on, so I moved the mouse a little and the Caring Bridge page came up on the screen.

Had the room been washed down and devoid of anything “Janie,” would have been such a harsh moment for me. In those brief, silent minutes I was able to breathe the same air that she had so recently breathed. I was able to feel her life, her fight, her struggle, her laughter, her smile. I could be in the place where she left her sick, tired body behind and soared on angels’ wings far, far away from pain and hurting and sickness.

My sister and I talked about this for the first time last night. She understood how hard it was for me to go back into that room, and she also knew how therapeutic it was. I told her I knew another child was in that room tonight…another mother holding vigil, crying, feeling totally helpless, praying “time” will be on their side.

So tonight, as I look back on the million years and the brief moments that I have been without Janie in my arms, I pray...I pray for the time that all childhood cancers are cured...so no other child will be in “Janie’s Room” ever, ever, ever again.

Forever missing Janie...
Janet

January 30, 2003

Just wanted to let you all know we are doing okay. Haley, Anna, Daniel and David have all been sick, one at a time. They are all better now.

I’m going to backtrack now and tell you about the day Janie went in for her stem cell transplant. It was December 11, 2002….just a few weeks ago…seems like a year. On that day, as we were walking across the crosswalk from the parking deck to the hospital, I knew it might be the last time for Janie. I was walking behind Dan as he carried Janie in his arms. I listened to them talk and giggle. He always managed to be upbeat around her no matter what. (I, on the other hand, have a little more trouble holding it all in.)

And as I tried to keep up with them, all of a sudden, Dan turned around and started walking back towards the parking deck!

“Where are you going??” I asked…half thinking he was ready for us to all jump in the car and run far, far away…

But he kept walking and answered very matter of factly, “Janie is going to drive.”

What??

I only asked that in my head as I quickly rearranged Janie’s luggage and my camera bag I was juggling. I had to practically run to keep up with Dan as he still carried Janie in his arms. She was looking back at me over his shoulder and very happy about getting to drive.

Remember, on that September day, the day I took her to the bank and she threw in her pennies?? Her three wishes were to be a Princess, get a Spongebob toy, and…to be a grown up….

To her, part of being a grown up meant you got to drive a car. She should have learned when she was 15 years old. But Dan knew that 15 for her might never come. He knew he may miss taking her to an empty parking lot, teaching her start the car, putting it in gear, checking the rearview mirrors….He was just so determined that Janie was not going to miss out on something that she dreamed about.

So, with Janie on his lap, the van humming, I grabbed my camera, ran around to take the snapshot of a lifetime. She sat proudly with her pink fluffy boa wrapped in style around her neck, and blue furry gloves on….fashionable and ready for the road.

I jumped in the back seat and kept snapping pictures. Dan talked her through the turns… “..turn a little more…you’re doing great….now start turning a little left…not too much…” She drove to the top floor of the parking deck and parked the car.

He did it. He made one of her dreams and one of his dreams come true. He taught his daughter how to drive.

Soon we had to park the van. We went over the crosswalk for the final time. Within the hour she was admitted, got her last hospital bracelet, settled into her room.

I got those pictures of her driving developed right away. And in those last few weeks, every time I pulled out the picture of her sitting in the driver’s seat, ready to speed off, feeling so grown up…..I would show it to her….and she would smile.

Forever missing Janie...
Janet

p.s. In the photo section of CaringBridge, I added the snapshot of her just moments before she started driving.

Also, for those of you in the Birmingham, Alabama area....I just learned of someone newly diagnosed with leukemia. She is in Brookwood hospital and may need blood O + or O -. If you are available to help with blood donations, you may contact her relative, Tammy Abston. Her email address is
Tammy.Abston@Protective.com and her home number is 674-1287.

First, I want to say I have read the personal emails you have sent to me and I’ve read every entry in the guestbook on Caringbridge…and as always, your words have inspired me to breathe one more breath, awaken one more day, smile one more smile, and cry one more tear. It seems you have all given me the go ahead to continue to bear my broken heart. So here goes….


January 21, 2003
We had a long weekend, the kids were out of school on Friday and Monday. Dan couldn't take being here. Just too hard. So we left town. I know it was helping Dan, but I couldn't take that "all" of us were in the car together and there were only 6 of us. I cried as we drove past Janie’s cemetery and I cried all the way past Montgomery. She should have been with us….

We ended up going to Fairhope, AL to look around, then left and went to Gulf Shores. We stayed right on the beach--cold but very very cheap, actually cheaper than if we’d stayed at home for a movie and dinner!

Sunday morning I ran on the beach by myself. I could imagine Janie running along with me, her hair long with sweet curls on the ends. Then, I remembered the last time she and I walked together alone on the beach in Destin in October 2002...I told her the famous story of the footprints in the sand...you know...two sets of footprints during the easy times of life were of the man's and God's...the one set during the hard times of life were of God as he carried the man. When I told her about it, she wasn't too impressed! She was happily looking for seashells, which is a task in Destin....shells are very little and sparse. But she would find them. Didn't matter if the shells were broken, discolored...to her they were all beautiful, worthwhile, special. And I thought the same about her...it didn't matter to me how broken the cancer made her or how broken the chemo made her. She was, and is, beautiful, worthwhile, and very special.

It is still so hard. Will it ever be better? I can’t seem to get over things like only setting 4 plates instead of 5 for their snacks…finding only 4 sets of shoes….setting out only 4 toothbrushes….tucking only 4 babies into bed.

Then, there are her clothes. Oh, her sweet little clothes that she loved so much…. When I was putting away clothes in the girls’ room today, I would pick up Janie’s favorite shirt, or favorite dress, or the cool beaded bell-bottom pants. I would hold up the clothes close to me and shut my eyes. I wished they had never been laundered…then perhaps they would still have a little smell of her skin….still have a little part of her lingering somewhere within the fibers. But nothing, just clean clothes that used to have some meaning. I still put them to my face and savored the moment. Then I heard David call to me from somewhere else in the house. I put Janie’s clothes back in her drawers…I’m nowhere near close to discarding of them. I will probably keep them forever. The grief continues….

Our family will begin grief counseling in a couple of weeks.

Now, to get off my chest….Sorry for not answering the phone, for ignoring my emails, not returning messages, locking my door when you pull in the drive, etc. (a few of you have actually gotten to me at home before I could lock the door and close the blinds!! Too sneaky!) Even my family I have kept away. I’m just not ready yet. For now, I will wear my smiling mask when I actually see anyone in public. One day, I know the smile will be real…just not yet.

On a lighter note….

I am reminded daily that I am still a mom and I have the task of maintaining order at home…The other morning the boys woke before us (which is normal…they usually get up around 5:30am!) Well, my sweet boys took a nice pillow from the couch and cut the material off with their plastic scissors…nice plaid pillow cut into tiny little shreds and left all over the floor. Then, they found some Barbie’s who still had hair (imagine that!)…and promptly took care of that oversight. Anna cried for a good hour. This afternoon, Daniel threw his bike helmet, hit David and knocked him off the front porch into the flowerbed. Only a minor abrasion that I applied ice…which worked great until David decided to eat the icecube instead.

By the way, Haley is better and back at school. David now has the fever/headache, etc and was home today. By the afternoon he was getting better. We played matchbox cars in the living room for hours. I wonder which child will be sick next….One by one the “4” will get this fever. I think God is making sure I am not at home alone for a while.

Until later…Janet



For information on books by Janet, email booksbyjanet@juno.com or janetsims@juno.com

Thursday, January 16, 2003 at 04:23 PM (CST)

January 16, 2003

(Before you read this, please know that since January 4th I have had moments of strength, moments of weakness, moments of misery and happiness. For those of you who wish in these last several days that I never asked “WHY!” or never screamed in agony…you will be disappointed in me and in this entry. Despite the fact I am strong in my Christian faith, I sometimes hide my eyes and wallow in my grief. Sometimes, in a moment of happiness, I feel guilty that I am finding peace. Which is crazy! You all are praying for us to have peace. God knows Janie now has peace. So, if you want, read my words of this grief stricken mom…and know underneath my words of despair is a solid ground of faith…even if it doesn’t always sound that way....)

Today I woke up. I didn’t want to. I would have to face another day without Janie. Another day without her touch, her laugh, her whispy voice. Another day with too much time on my empty hands. It is so hard to say that my life is much easier now…because I would give all my free time or anything to go back to the last 15 months as long as Janie were here. I’m so selfish to feel that, but I do. Since Oct. 6,2001, my life revolved around doctor’s visits, blood work, medications, antibiotics, waiting on test results, analyzing lab work, hours in an exam room, blood transfusions, etc. along with taking care of the other 4 kids. I barely got anything else done. The house was a wreck, the laundry overflowing, my car was always dusty. For all those months, I rarely even put on makeup because it took time away from taking care of Janie.

Now, when Haley, Anna, Daniel and David go to school, I sit empty in my house with my hands aching for the busy work, aching to be taking care of Janie. There are no antibiotics to remember to get out of the refrigerator, no lines to inject heparin and saline, no chemo to crush and put in pudding, no calls to the hematologist. I feel very lost as I try to remember what a normal life is like.

On Sunday, my oldest daughter Haley got sick. Fever and throwing up. I went easily into nurse duty. I was comfortable “doing” something….wiping up the puke, changing the sheets, Lysoling everything down. I grabbed the bucket several times to let her throw up. I held back her hair. Wiped her mouth. Got her crackers and water. Took her temp. I was needed. In a medical way.

This morning she woke up with a fever of 102. Dan took her to the doctor. I was frantic. I had flashbacks of taking Janie to the pediatrician with a fever and the news coming back “leukemia.” When Dan and Haley got home he told me she just had an ear infection….but I kept asking, did they take blood? Xray? Throat swab?….Dan looked at me like I was crazy. NO..it’s only an ear infection! I’m still in the mode of every symptom is a big red flag.

Bear with me in this grieving thing. I may say things that are over the top, or I may just ramble. But I’m learning. I know my 4 other children need me. I know they need me in different ways…They need me to listen, love, brush their teeth, help with homework, discipline, acknowledge, encourage, and a million other things. I will be here for them. I love them all so much. I miss Janie so much. We all do.

A dear friend reminded me of Psalm 34:18…. “The Lord is close to the brokenhearted and saves those who are crushed in spirit.”
......The Lord is surely sitting beside me right now…

Janet

Friday, January 10, 2003 at 09:49 PM (CST)

Dear Friends,

As I sit as the computer and sort through so many memories of Janie, I realize I could never write anything today that would come close to how we feel about our sweet baby. How could mere words describe a child so precious, so special, that she could touch thousands of people’s lives without ever even meeting them. How could mere words describe her whispered voice, her deep brown eyes, and a smile that warms your soul. But that was Janie. So sweet, caring, and smart. So many of you only got a stolen grin from her or even a little giggle. Dan and I were blessed enough to share that and so much more.

We shared her first breath, her first smile, her first steps. All along the way, she has been a joy to our life. We feel privileged that we were chosen to care for her. God honored us in allowing us to be her parents. Throughout her short years here with us, we taught her many things, like how to walk, ride a bike, and write her name. But indeed, in the end, it was Janie who taught us about courage…about love… about taking each day as a precious gift. She made us better people. Better parents. She is with us forever in our hearts.

I will keep the caringbridge web page going for a while to let you know how we are coping. I will add new pictures that we have been working on. Mostly, I’m just not ready to let go of this web page. It has been such a part of us for so long.

We want to now thank you all for every phone call, prayer, email, flower arrangement, dinner, monetary donation, gift…. but mostly for every tear you shed during your heartfelt prayer. Along the way, you’ve shared our triumphs and our trials. So many of you we have never met, and yet you have wept for a child you never knew. How can we ever thank you? With each letter or email or caringbridge posting, we carefully read each one. We draw strength in each piece of mail. I sat on the porch today with a stack of sympathy cards and I could feel the love and pain in your words. Thank you from the bottom of our hearts.

Love, Janet and Dan Sims

Sunday, January 05, 2003 at 07:06 PM (CST)

Services for Janie


Monday, January 6th: Visitation at Vestavia Hills United Methodist Church(2061 Kentucky Ave. 205-822-9631), Fellowship Hall. 6:00pm to 8:00pm


Tuesday, January 7th: Funeral Service at Vestavia Hills United Methodist Church, Sanctuary. 2:00pm.
Procession following service to Southern Heritage Funeral Home (475 Cahaba Valley Road, Hwy 119, 205-988-3511).

Saturday, January 04, 2003 at 01:29 PM (CST)

Update 1-4-03
A little after 4:00am this morning, our Princess Janie went to Heaven. Dan and I both were in bed with our baby and holding her close. Her last words to us were "I love you." We told her over and over how much we loved her and how honored we were to be her parents. Then Dan and I both sang to her "Jesus loves me, this I know..." Soon after that, Janie left to go home with the Lord.

Many of you know that today is also Dan's birthday. We celebrated quietly tonight at home with Haley, Anna, Daniel and David. They gave him a Spongebob cake and sang Happy Birthday to him...and then we sang Happy Birthday to Janie as this is her first heavenly birthday.

Thank you for all your prayers, support, love.

Dan and Janet Sims

Friday, January 03, 2003 at 03:29 PM (CST)

update 1-3-03
fungal infection in lungs,massive. Doctors say she may only live a day. Dan and I are with her. j

Thursday, January 02, 2003 at 10:05 PM (CST)

Update 1-2-03
Thank you for the huge response about donating white blood cells to Janie!!I have compiled a list of possible donors and will let you know if we need you to donate specifically for Janie. I encourage all of you, no matter what your blood type, to give blood/or platelets when you have the opportunity. Right now, Janie will not get a transfusion of WBCells until her lung is better. They feel it would not be beneficial at this time.

Today has been okay. They did a nose swab(-the long metal stick with the cotton that they put deep up in her nostrils) to check for various things (test came back negative for anything! finally good news.) They went up on the amount of oxygen she is getting. Her breathing is still labored and she is tired. She will have a chest xray daily to check her lung and will have a CT scan on Monday to check the 2 lesions on the lung. (The lesions don't show up on the xray...only the CT scan.) They also started her on steroids to possibly help the lung.

To sum it up, they don't know exactly what the problem is in the lung. It could be a fungal infection, other infection, or it could be damage from the chemo/radiation. Please pray specifically for her lung to be healed.

On to good news from yesterday...she ate 3 bites of Jello! First food she has eaten in a couple of weeks. I was as excited feeding her those bites as I was years ago when I feed Janie her very first solid food!

Yesterday, she got a blood transfusion and platelets. She got platelets again today. I will leave her blood counts below.

Also, I wanted to let you know her stomach pains seem to be less today. Thank you for your specific prayers to relieve her pain.

I have to run.
Love, Janet

WBC 0.22
RBC 3.50
Hemoglobin 10.3
hematocrit 28.8
platelets 40

Wednesday, January 01, 2003 at 09:52 AM (CST)

Update 1-1-03

Janie has had some difficult days since last update. She has had 2 ultrasounds done on her liver,etc. Her liver is enlarged...she is taking meds for the elevated bili. She still has severe stomach pain. She gets some relief from taking phenergan and sleeps alot. She has had a few chest xrays and a CT scan. They found 2 lesions in her left lung.....think it is a fungal infection. They started her on antifungal meds. They may need to give her irradiated white blood cells today. (These white cells would not start growing in her....would only be a temporary help to fight off the fungal infection.) Janie's breathing is labored and she is on oxygen now.

For the Birmingham people....those of you who are O+ and CMV negative, and would be willing to give blood/white cells, please email me again and let me know. We will first be going through the regular blood bank but need standyby people just in case. Right now, they are waiting on her breathing to become more stable before doing anything...

Got to run...j lab results from yesterday below

WBC 0.34
RBC 2.50
hemoglobin 8.8
hematocrit 20
platelet 40(thou)

Saturday, December 28, 2002 at 11:38 AM (CST)

Update 12-27-02
We hope you all had a Merry Christmas!

On Christmas Eve it was very hard for me to leave Janie in the hospital. Even though I knew Dan takes very good care of her at night and even though I knew my other 4 children needed me home, it was so hard. I hope this is the only Christmas my family ever has to spend apart.

Christmas day was an emotional struggle for me as I tried to stay upbeat. And then, I remembered just less than 3 weeks ago when the doctor called and told us we had to come in immediately for the transplant or Janie wouldn't make it to Christmas. When I got to the hospital on Christmas day and saw her pretty little face, I was so thankful and full of joy. God had surely blessed us with one more day...and then another...and then another...

Medically speaking, it has been rough...The mucositis is still very painful. Her mouth is in a lot of pain. Her gums are so swollen that I can barely see her teeth. She still has stomach pain, sore bottom, fevers, etc. She has been throwing up blood,mucous, and bits of skin from her esophogus. How does she stand this?? I can't imagine that any amount of morphine could ease this child's pain. Only God's strength pulls her through.

Now... to really GREAT news....The doctors feel very confident that David's stem cells are engrafting and beginning to work!! Janie has several symptoms associated with engraftment and her blood work seems to back it up. We still have a long way to go....But in a few days, they will be able to do a blood test to determine if the cells in her blood are from her old marrow, or from the new stem cells from David. Technology is amazing. I am still holding my breath!!! But for now, all is going very, very well. We expect nothing less than a miracle.

Love you all, Janet

Monday, December 23, 2002 at 05:39 PM (CST)

Update 12-23-02
Quick update...Janie had some fever yesterday and last night. Had chest xrays, more antibiotics, blood cultures drawn, etc. They are very aggressive when fever starts. She is in lots of pain...stomach, throat, mouth. Last night when Dan was here he said she had to have morphine (she is now on a continuous drip and has pump for extra relief), she also had demerol, tylenol, benadryl, etc. Today her bottom is bleeding from the constant diarrhea. She also has had nose bleeds. Her platelet count is low and she will be getting a platelet transfusion soon. For those of you who want her blood counts today, they are below.

Love, Janet

Platelet 23
Hematocrit 25
hemoglobin 8.7
White count 0.04

Saturday, December 21, 2002 at 08:02 PM (CST)

Update 12-21-02

Doing good. David went home yesterday (Friday) and is back to his wild self. I'm trying to add his photo on the caringbridge page.(www.caringbridge.org/al/janiesims) Check that out soon. I am so proud of him. He went thru so much... He always said he wanted to help his sister, but I know how hard it was on him. When I told him Thank you afterwards, he just said "i helped janie."

Janie is doing okay. She had a blood transfusion yesterday and will probably have many more in the weeks to come. She is not eating at all now. Her mouth and throat have sores that are extremely painful. We knew the mucocitis (sp?) was "normal" at this point but it still kills me to see her in such pain. The stomach pains are just as bad now.May be sores in her stomach too. She is on a higher dose of morphine and we are meeting with the docs to further consider pain management. We will probably have her on a steady small dose of morphine and then have a pump for additional morphine during the really bad times.

Her skin around her Hickman catheter is also a problem now. Doing daily dressing changes (which is necessary to keep the area clean) and having to remove a bandage with adhesive is really irritating to her skin. Tonight we cleaned the area, skipped the adhesive bandage and instead wrapped her in gauze and an ace bandage. looks like a tube top.

She is sleeping now. I have to go.j

December 19,2002

Update 12-19-02*** Transplant is done!!
Janie is doing GREAT! She received David's stem cells tonight. David was allowed to be with us in her room. The small bag transfused easily as Janie was in bed...many nurses/docs were with us.

Janie, being the shy child she is around the medical staff, never showed her face during the transplant. But after everyone left the room, Dan and I had a few quiet moments with her alone. Then, she wanted a nice warm bath and later ate a few bites of a Peanut Butter and Jelly sandwich. Doesn't sound very exciting, but to me, it was a magical moment far more than I could imagine.

What an emotional day for us!!! And even more emotional for me when I sat to read all your inspirational emails from you all. Thank you for getting us through this. We, meaning all of you and us, have reached a milestone. You all have come along with us on this journey and we would not have gotten to transplant without all of you reading this right now. God deserves the praise but know that His strength was delivered to us through you. I wish I could acknowledge you all individually, but I just physically can't. And though I want to, I ultimately know my energy should be placed on the needs of Janie and all my other children. I know you understand...but please know how much I would like to email you personally.
All for now.
Love, Janet

Thursday, December 19, 2002 at 06:10 PM (CST)

Update 12-19-02
About 30 minutes away from Janie getting her new stem cells!!!! David did great today. It was rough this morning...had a slow start...several glitches until the pheresis got going around 12:45 today.

Transplant should begin around 6:30pm or 6:45pm and last just a few minutes.

David is staying in the hosp. tonight...may have to get more cells tomorrow...long story.

love,j

Wednesday, December 18, 2002 at 10:47 PM (CST)

12-18-02
Here I am on the eve of THE TRANSPLANT. I am so anxious, hopeful, tired, etc...Many of you will be reading this as we begin retrieving stem cells from David. He will have blood drawn at 4am and then the pheresis will begin at 8am. Then, they keep working on him until they get enough cells. The stem cells will then be processed and transfused into Janie. I just can't believe it!

Today, David had a central line placed in his upper left thigh/groin. I was beside him until he fell asleep from the anesthesia. He was a little scared but he did great. I held my breath in the waiting room until they were finished....about 30 minutes. By the time we were back in the room, he was awake and asking for pizza....which he got!

After a while, David had some pain and got Tylenol w/codeine. That seemed to work because he was then able to play and walk around. He also learned how to call Janie's room (which is next to his) and called her over and over just to talk. David is not allowed to come into Janie's room because she is so susceptible to germs. But he can come to her door and see thru the big window. I looked up many times today from Janie's bed and saw David's sweet face pressed against the window and his hands waving to us. Dan has been with David all afternoon and evening...I've been with Janie. We will swap in a minute.

Janie had a really good day. Still stomach pain and diarrhea...but not as bad. No fever!! Still only eating a few bites of food a day. Getting nutrition thru her IV. Her WBC is .12 and dropping. This is scary because it is sooo low...but this is exactly where it should be. She knows tomorrow is the big day...her new birthday! She is sleeping soundly now.

For now, I want to say a big, huge THANK YOU...to all of you,for so many things (dinners, childcare,etc) but mostly for prayer!!Thank you for your powerful prayers. God is listening to us and hears our cries. He receives the glory in any of the successes along our journey.

Dan and I love you for your continued support.

I will update you as soon as possible tomorrow.
Love, Janet

Tuesday, December 17, 2002 at 11:06 PM (CST)

12-17-02
Janie is doing better. Fever down to around 99 or 100. Still has bad stomach pains and diarrhea. She had some good moments today. She had the hospital teacher come in to teach a kindergarten lesson for about 30 minutes. She also ate a little today. Her blood counts are really down...that is expected. (Her WBC is now .51 )

I haven't gone into much of what David will go through. There were 2 different options to harvest the cells we need. One was the typical bone marrow harvest where he is under general anesthesia and they take marrow from the hip bones over and over. The second option was to collect the stem cells from the blood....Only David is so small that they would have to insert some sort of central line to be able to do this option. After months of research, meetings, praying, etc and for many different reasons, we had to go with the stem cell harvest from the blood. So...

David will go in to the hospital in the morning. He will have a light sedation (no tube down his throat) and have the line inserted in his upper thigh. ( He will be asleep and feel no pain.) Then he will spend the night with me in the room next to Janie. On Thursday, he will have a process called pheresis...This machine takes his blood, gets the stem cells it needs, then puts the rest back in David. When they retrieve enough, his catheter will be removed and he can go home. The stem cells will then be processed and transfused into Janie on the same day (Thursday).
Much to do. got to run.J

Sunday, December 15, 2002 at 07:31 PM (CST)

Update 12-15-02
Janie's temp got up to 104.6 today. Treating with Tylenol. Up a lot last night trying to manage the fever. Has diarrhea, vomiting. Did the chemo (cytoxan) this morning. Had a blood transfusion this morning. Not been out of bed except to go to the bathroom. On anti nausea meds. Had morphine this morning.Still on antibiotics. The blood cultures still not showing a bacteria growing...her fever may be due to a viral or fungal infection. Just don't know.

On a good note..she finally started taking her oral pills by swallowing with water!!!!!She usually has a hard time with oral meds...would have to take them crushed up and put in jello,pudding,etc. But that technique wasn't working any more. Swallowing the pills is a major step and we are so proud of her.

Janie's sisters and brothers are really missing her now. Very hard on them,,,scary and uncertain time for them. Please pray Dan and I will continue to give them the attention, love, etc that they desire and need.

have to run.j

Saturday, December 14, 2002 at 09:46 AM (CST)

12-14-02
Bad night last night. Dan was there and updated me just a few minutes ago.Janie is in terrible pain. Head hurts extremely bad. She got morphine last night before I left and was sleeping. Woke up around midnight and got morphine again. They did an EKG because her heart was racing (EKG is normal.) More pain, more morphine. 3:30 am fever of 102. Stuck arm several times and hand to get blood cultures. She is having a terrible time taking anything orally. They managed to get in Tylenol. Got 9am morphine. Needs to take bactrim but is asleep. Started IV antibiotics. Should be starting chemo (etopophos) now.j

Thursday, December 12, 2002 at 11:17 PM (CST)

Update 12-12-02
Just time for a short note. Janie is doing okay. The radiation is so extremely hard on her...She goes in twice a day, gets 18 minutes on her front and 18 minutes on her back at each visit. She is in a room by her self, with low lighting, the door they close to the room is about 8-10 inches thick. All by herself. She has to stand the entire time and not move. Dan and I can talk to her over the intercom. We talk, read, sing, whatever to get her thru it. Dan has been incredibly strong during this but we all hate it and ache that she has to be subjected to this.

She is not eating much. She is on pain killers, etc. Has some good moments in the day.

I need to go. Tomorrow is the last day for radiation. Then we have 3 days of chemo. I will get to the hosp. early tomorrow morning for a meeting with the doctors, then I'll run back to the twins' preschool to see them in the Christmas program, then go back up in time for Janie's radiation. Dan will not work this week and will stay with her while I'm going back and forth.
Love, Janet

Tuesday, December 10, 2002 at 11:50 PM (CST)

Update 12-10-02
As most of you read this email on Wednesday morning, we will already be at the hospital. Janie's cancer has progressed from the bone marrow and is already showing up in her blood. We can't wait any longer for the transplant. We will be at the hospital at 7am to be admitted, go for CT scan, etc and have radiation at 1pm and 5 pm. She is scheduled for 3 days of radiation, 3 days of chemo, 2 days of rest and the transplant on Dec. 19th.

Last Saturday, Janie was having a little leg pain. But on Sunday, it progressively got worse. On Sunday night, her pain was severe and she started on pain killers. I also noticed she began sweating at night again. I think I pretty much knew in my heart then that the cancer was really bad. Right before she relapsed in Sept, she had severe jaw pain and night sweats....so her pain the other night was unmistakable.

Yesterday, after an hour and a half meeting with the transplant doctor, Janie had a CBC. That night they called to tell us the leukemia was showing up in her blood. They confirmed that news today.

I just can't go into any more tonight. As you can imagine, our hearts are aching. Dan and I still hope for a miracle. According to the doctors, our chances for long term survival are very slim. The pain in our whole family tonight is so overwhelming. I am hurting beyond belief. I worry about Dan. He has remained so positive, so faithful and hopeful. But now, he is barely hanging on. Tonight he danced ballet with Janie....and now he is holding her in his arms as they sleep. So I'm asking for all you Daddys out there to pray for Janie's Dad.

That's all for now. I am going to get in bed with them and enjoy our night together. It will be a long time before we 7 are all together again.
Love, Janet

Saturday, December 07, 2002 at 10:13 PM (CST)

Update 12-7-02
Yesterday the MUGA scan showed Janie's heart is FINE!!! Yes! Finally good news!!

I won't go into everything....David had his blood drawn and was a little upset. Besides the MUGA, Janie had blood drawn from her arm and from the Hickman, saw the doctor, etc. Dr. Berkow confirmed the bone marrow results showed a weak remission, with what they call Minimal Residual Disease...meaning very small amounts of cancer, but it is still there. Because of this, she will have to take an oral chemo (6MP) at home to keep the cancer under control. This should not mess up our schedule to go to transplant this month. The schedule for now (subject to change ) is to start radiation on Dec 16-18. As far as I know, she will be admitted at that time and stay for the duration of transplant and who knows how long.

Dan and I meet with the transplant team on Monday at 11am. Janie will go in for check ups during the week and is scheduled to have another bone marrow aspiration on Friday.

Last thing, we got a dreaded phone call today that she had to go to the ER. So, Dan took her this afternoon. The problem? The blood cultures from her Hickman they took yesterday (Friday) are growing a bacteria. (This is totally unrelated to the E Coli infection. That seems to be cleared up.) We don't know what the bacteria in these cultures from the HIckman are yet. Today in the ER they took another sample from the Hickman to check for bacteria. If this sample, plus yesterday and the one from a couple of weeks ago, all grow the same bacteria, we have a problem. We would have to treat it before transplant. If the 3 cultures grow different bacteria, they will know is was a contaminated sampling.

Janie did not have to stay after the ER visit. She is home and sleeping soundly.
All for now. Love, Janet

Thursday, December 05, 2002 at 11:27 PM (CST)

Update 12-5-02
Today we received a brief update on the bone marrow test. The cells they were concerned about yesterday may be possible leukemia cells. Since it is uncertain, they said this is not a "solid" remission. Basically, I don't know what to tell you. We are told the transplant is still on for now. I will take Janie and David to the hospital in the morning as planned for the MUGA scan, etc. I'll try to update tomorrow night.

Now, I want to tell you the story of Janie's 3 wishes.

Not too long ago, right after she relapsed the first time, I had to run to the bank and I took Janie with me. It was a beautiful, sunny, September day. The bank I went to had a big water fountain right outside the entrance. Since it was such a warm day, I asked Janie if she would like to stay outside...maybe throw some pennies in the fountain and make a wish. She was all for that, so I found 3 pennies at the bottom of my purse. I went on inside the bank and watched through the big windows. She was happy as one by one she threw in her pennies.

A few moments later I was finished with my errand and went outside to join her. Never dreaming she would actually tell me what she wished, I asked anyway.
"Did you throw in your pennies and make a wish?"
"Yes."
"What did you wish for?"
"Well, for my first penny, I wished I was a Princess!"
How sweet! She is such a girly-girl. It made me smile.
"What did you wish for the second penny?"
"I wished I had a Spongebob toy."
Okay, note to self....get Spongebob toy for Christmas.
"Wow! What did you wish for the third penny?"
"I wished I could be a grown up."

That one took my breath away. She was laughing about how she wanted to drive a car and all the other things you can do when you are a "grown up."

I laughed with her. But inside, all I could think was that was my wish too. If I had a billion pennies, I would throw them all in the fountain and wish the same thing. I want her to have the chance to be a grown up.

This story is why the Vestavia Hills Christmas parade was so important. That night, when she rode in the horse drawn carriage and was announced as Princess Janie, I could hear her soft little voice from two months ago saying "I wish I was a Princess...."

And that is the story of Janie's 3 wishes. Please pray for all her wishes to come true.
Love, Janet

Thursday, December 05, 2002 at 09:28 AM (CST)

Update 12-4-02
We still don't have definite results on Janie's bone marrow test. They said it looked good but there were some cells that were a little questionable. We will hold our breath until we get a more detailed report...maybe tomorrow afternoon or Friday. I hope it will be SOON! The waiting is awful.

We were at the hospital today from about 8:30am to 4pm. The day started with several tubes of blood drawn from her Hickman cath. They will run all sorts of tests on the blood...all this is in preparation for transplant. Then we did the following:

Echocardiogram- This test showed a decrease in her heart function since they ran this test last month. We knew some of the chemo she was taking is very hard on the heart. So now, she will have to have a MUGA on Friday to further check her heart. (MUGA stands for Multiple-gated acquisition scan and is used to check the efficiency of the heart pumping and if any damage to the heart has occurred.)

Bone Marrow test under light anesthesia
(While she was asleep for the bone marrow test, they also removed stitches from her Hickman cath surgery that never dissolved, they drew blood from her arm to test her clotting factors, and they did the awful nose swabs...Remember last month when she had that done? It was a long metal stick with a swab on the end that they inserted deep into her nostrils. It was awful!! So this time they were able to do this while she was totally out!! Thank GOD! The nose swab tests for different infections such as RSV. All that came back negative.)

3 Chest X-rays-Also required by the transplant team. Janie was wheezing today from a cold she has, but the xray showed she was okay in her lungs.

EKG

Urinalysis

She saw the dentist as required by transplant and was fine for mouth/teeth health.

She was examined by Dr. Berkow

And last, she had her antibiotic through IV since we wouldn't be able to make it home in time to give her 4pm dose.

It was a long day. Dan was unable to be there for quite a while because he had a car wreck on the way to the hospital. He is okay..just without a car for a while. My sister Bonnye and my niece Melanie were there with us to help out.

Thank you for all the prayers today. I felt very strong today, and I'm sure it was due to the massive prayer chains.

When I hear more news, I'll let you know. But for now, we go back on Friday for the MUGA and David will begin testing again so he can be the bone marrow donor. Probably lots of blood drawn, general health checked, etc.

I have to run.
Love, Janet
(Janie's webpage: www.caringbridge.org/al/janiesims
CBC results for those interested:
WBC 17
RBC 4.7
HGB 13.6
HCT 38
Platelet Count 84 thou
SEG 58%
Band 20%
React lymph 4%

Tuesday, December 03, 2002 at 11:50 PM (CST)

Update 12-3-02
Hello everyone...Late breaking news.....Tomorrow (Wednesday), Janie will go in for a bone marrow test at 10am to see if she is in remission. As you read this, please say a prayer that she is in a solid remission. We should know the results soon after the test.

When we went in for blood work yesterday, they said her counts looked pretty good. They stopped the neupogen injections..YEAH! We continue on with the antibiotics to treat the E Coli. We will find out in a few days if that is taken care of. They will do blood cultures on Thurs or Fri. I think.

Tomorrow will be a long day. From what I understand, they will also begin re-doing all her tests in preparation for transplant. I think she will see a cardiologist and a dentist (no teeth pulling this time!!!). Basically, I'm planning for us to stay the whole day. They will run a billion tests on her before taking her to transplant.

On to David...He is fine, but I did take him in to the pediatrician to check for strep throat. Anna had it last week and David said his throat hurt. The rapid strep test came back negative but they will check the culture over the next few days. We really need to keep him in tip top shape too for him to be able to donate his bone marrow. I really think he is fine, I'm just being very cautious.

We will let you know how the bone marrow test comes out tomorrow and get out more information on what will happen next.

On a lighter note...Janie got to ride in a horse drawn carraige with Cinderella in the Vestavia Hills parade last night. Those of you who know how shy she is will be happy to know that she threw out candy and waved to all the many spectators. Many moms, dads, and kids yelled out Janie's name as we passed by, and waved to her. I think she felt just like a princess. As a matter of fact, they announced her as "Princess Janie in the blue hat." (For those of you who heard my story of Janie's three wishes....being a Princess was number 1 on her list. Wish GRANTED! Remember the next two wishes?? For those of you who don't know, I'll tell you soon!)

Now I need to go and give Janie another antibiotic. She will sleep through it. I think I will be up for a while tonight. So many things to think about, so many nails to bite.... I am a bundle of nerves...
Just remember Janie tomorrow.

Love, Janet

Friday, November 29, 2002 at 11:32 PM (CST)

Update 11-29-02
Janie is HOME!! They finally specified the bacteria she is fighting....E Coli. One of the antibiotics they began on Monday will take care of that. She will continue that antibiotic for a few more days. Today a nurse came in to train me on how to give this antibiotic at home through her Hickman cath. (If I didn't learn how to do this at home she was going to have to stay in the hosp. until Tuesday.) It is pretty easy (thank goodness!) but I have to give it 3 times a day (8am, 4pm, midnight). It takes about 30 minutes to do each time. I'm also doing the neupogen in her Hickman each day which takes about 45 minutes. I hope soon we will be able to stop the neupogen.

She was feeling much better today. Her blood counts overall were better today...although her platelet count continues to go down again, the White cell count was much better. (For those of you in the medical field...Her White Blood Cell count on Monday was 0.15 and today it was 2.19. Her hematocrit on Wednesday was 18 and today it is 32).

That's all for now. They are all sleeping and I'm going to get her antibiotic ready.

Love, Janet

Thursday, November 28, 2002 at 10:46 PM (CST)

Update 11-28-02
Happy Thanksgiving!!

I hope you are all well. Today, we are so thankful for all of you and the many prayers you have sent up for our family. I hope you will continue to remember us in your prayers...this helps us more than you will know.

Yesterday, Janie felt bad all day. She didn't leave the room at all until it was time for Dan to come up and me to go home. She let me roll her in a wagon to meet Dan at the elevators...then she went back to bed. Her temp fluctuated between 99 and about 103 all day. We still don't know the specific bacteria we are dealing with...still waiting on the results of the blood cultures to specify this. She seems pretty stable to me right now, just tired and a little nauseous.

Also yesterday, Dan took Janie's sister (Anna) to the doctor...And we found out Anna has strep throat!!! Dan had to take the day off from work to care for her. The boys and Haley went to a friend's house and I stayed with Janie at the hospital. We immediately informed the nurses and doctors about Anna's condition and they reassured us that Janie was already on heavy anitbiotics. Anna has already been on antibiotics and thankfully had enough doses to be able to see Janie today.

This afternoon Dan, Janie, Haley,Anna,Daniel, David and I all met for Thanksgiving dinner on Janie's bed. Janie is still not eating much, but she did manage a few bites of turkey and some mac and cheese. I know she really enjoyed seeing the whole family....Although, I'm sure we were so loud that the nurses were glad to see the caravan pull out of the 4th floor this evening!!!

I am home now with Haley, Anna and the twins. I miss Janie and Dan even more tonight. I can't help but think that we were suppose to have the bone marrow transplant yesterday. I wonder what we would be up to today if that had taken place. Oh, well, I'm just thankful that today we all got to be together, if only for a while. I hope you all spent the day with those that you love too.

Until later...
Love, Janet

Tuesday, November 26, 2002 at 11:20 PM (CST)

Update 11-26-02
Hey everyone. Last night after I left the hospital, Dan said Janie was sick. She threw up and had diarrhea. He got her cleaned up, gave her some anti nausea meds and she felt better. This morning she was a little sick again.

Today, she was mainly tired and had leg pains. I massaged her legs which made her feel a little better.Then she finally took some Tylenol to help. She also had a fever today of 101.4. We found out her blood cultures they drew yesterday are growing some bacteria. We won't find out the specific bacteria for a day or two.

Her blood counts are okay today. Her platelet count went up to 46...a BIG change from 2 yesterday. I feel much better!!

We had a few bright moments for today....Janie felt well enough to let me take her in a wagon to the lobby of the hospital to see a play by the Children's Theater. It was fun but wore her out. She spent the rest of the afternoon in bed. Then, this afternoon, she ventured to the Activity Room to make a paper turkey out of her hand prints. Then, this afternoon, she let me give her a little sponge bath. She didn't want it but it made her feel better afterwards. We also got her dressing changed over the Hickman cath...the stitches that were bleeding a little on Friday look fine now...no bleeding.

You can probably tell I feel less frantic tonight. Today was a piece of cake compared to yesterday!!! Oh, and for those of you who have asked to donate platelets and blood, I'm told the Alabama Community Blood Bank on the corner of Lakeshore and West Oxmoor (for those of you in the Homewood/Birmingham,AL area) is the place to contact. There is a whole long explanation about why not to designate specifically for Janie..but I won't bore you with that. Just know that if you donate what she needs, that she or some other person in need will get your lifesaving donation. Just go and donate for the general bank. If anyone else knows more about blood/platelet donations like where else to go to donate, etc. please fill us in! We are learning as we go.

I'll update you in a day or two. Love, Janet

Monday, November 25, 2002 at 11:39 PM (CST)

Update 11-25-02

Janie is back in the hospital. Her temperature went up to 101 this morning so we called the hospital and they said come in. By the time we got there her temp was 103. We went directly into an exam room where a doctor, 2 nurse practitioners and 3 nurses were waiting for us. They drew blood from her Hickman cath and from her arm. (They stuck the first arm and couldn't get it good so they had to stick her other one too. She was pretty hysterical at this time.) They taped gauze down pretty tight around her arms at the inner fold of each elbow where they had stuck her because she was having a hard time clotting. Just having her arms taped where she couldn't bend them made her upset.

After they got the blood for her blood cultures, they immediately started with a couple of IV antibiotics and she took some Tylenol. Then, her blood counts came back from the Lab. Her platelet count was extremely low. I think the norm should be around 140-440. Her count was 2. We knew after the last chemo that we would be looking at really low counts...but that about made me pass out. So I knew we needed a platelet transfusion. But...there were no platelets in the hospital blood bank that she could use (O+, CMV-). We didn't know when they would have any...we were told it may be tonight or tomorrow. So, I made one phone call to start a prayer for platelets! And we got them shortly after that!!

When I left her tonight with Dan, she was sleeping soundly as the platelets transfused in. WHEW!!

Well, that's pretty much the day's events...Janie and I couldn't have taken much more!! I'm sure she will be in for a few days. We will watch her fever, blood counts and cultures. That's all I have the energy to write for now. I'm still shaking from the stress and fear. I'll update you later.

Love, Janet

Friday, November 22, 2002 at 10:39 PM (CST)

Update 11-22-02
Hello everyone. Yesterday I took Janie in for her blood draw and then came back home. But, I got the dreaded call in the afternoon that her blood counts were very low and she would have to come back in for a blood transfusion on Friday. We weren't too surprised because the chemo she just finished is pretty strong.

So, this morning we went pretty early and got started. It takes several hours for the transfusion and we kept busy with toys. I got a little anxious when her temp went up to 100. If it gets to 101, it is an automatic admission. But thankfully, after lots of prayer, it came back down to 98. We may be back in before the weekend is over...but, as always, I'm thankful for this night of being home.

The last hour or so of the transfusion, I had to let her cousin (an RN) come sit with her while I ran back to the elementary school for Haley's Thanksgiving program that she was in. Mommy has to be everywhere at once!! Anyway, I checked Haley and Anna out early and we met up with Janie to have some "girl" time.

Then, tonight during her regular dressing change, I saw she was bleeding from her Hickman cath sight. My sister, Karen (an RN) came over to help calm me down and help me assess the bleeding. Once we removed the dressing, we saw it wasn't bad... it was one of the stitches and we cleaned it well. This is to be somewhat expected...but believe me, I'll watch it like a hawk.

Well, I hope this update will do us until next Tues when we go back to see Dr. Berkow.

Love, Janet

Monday, November 18, 2002 at 11:03 PM (CST)

Update 11-18-02
Janie is home! We are so happy to have her here. The first thing she did was take a BATH! We had to wrap up her chest with a big bandage to protect the Hickman catheter and she only got a couple of inches of water in the tub...but it made her feel so good.

Today, I also had to change the dressing on her chest. (A nurse trained me the other day on how to do that and how to flush the lines.) Janie was scared (and so was I) but I did fine with the dressing change. It was very hard to see a tube coming out of my baby's chest. She is totally fine with it, except she was a little scared of what it would look like at first. I tell you what, I have a totally new respect for nurses!! If I can ever get through all this with Janie, I never, ever want to do one more nursing task!!! But for now, I have to change her dressing every Mon, Wed, and Fri. I have to flush the lines every day.

Also, she has to get Neupogen put into her Hickman cath every day for a while. This medicine helps to stimulate infection fighting cells. I will be doing this with the help of some family nurses. This is the medicine she was getting as leg shots a while back. Fortunately, after much research, talking, etc, we worked it out so she will not have the leg shots.

So, hopefully we will be home for a while. She goes in next on Thurs. for blood work and then again on Tues.

As for how Janie is feeling....she is tired and doesn't want to talk much. She didn't eat dinner again tonight. Lately she has a little breakfast, an Arby's roast beef for lunch, and that's it. Maybe now that she is home she will eat a little bit more and get some rest while everyone else is at school.

Well, that's all for now. I'll keep you posted.

Love, Janet

Sunday, November 17, 2002

Update 11-17-02
Hey everyone. Janie is still in the hospital. She is doing fine and tolerating the Ara-C and Idarubicin well. She's not eating much and she is pretty irritable. She cries every day to go home. Tomorrow morning will be her 10th Ara-C infusion and she should be discharged after that.

I'll update you as we find out specific dates on the next bone marrow test, etc. Until then, continue to pray.

Thank you, Janet

Thursday, November 14, 2002 at 09:19 AM (CST)

Update 11-13-02
The bone marrow test results did show that Janie has technically relapsed again. The leukemia is present in the bone marrow, though not so much so that it is showing up in the blood tests. Actually her blood work has looked good. The bone marrow shows about 20% leukemic blasts.

As we planned, Janie was admitted to the hospital today. Late this afternoon they started her Ara-C and Idarubicin. That went okay, except she had to do some eye drops to prevent conjunctivitis- apparently that is a side
effect of the Ara-C. She was very upset about the eye drops, but finally let me do it after she put drops in my eyes to make sure it didn't hurt me! Anything for my baby..

So the plan is to do 10 doses of Ara-C, given twice a day. And the Idarubicin given once a day. Then we will do G-CSF (neupogen) for a while (week or two?). The Neupogen were the leg shots we had last month. This medication stimulates the growth of infection fighting cells in the blood. (I will insist on this being done in her new Hickman cath. instead of making her endure the leg shots again if at all possible.) Some time after that, we will do another bone marrow test to see if we can get her back on schedule for transplant.

Today, I told Haley and Anna they could go home after school with any friend they wanted because I would not be able to pick them up. They said they'd rather go to the hospital and be with Janie. I let them come today
because if this Ara-C makes her sick like last year, then today will be Janie's best day. The girls had fun. We went to Children's Harbor and played.

Tomorrow we will do more chemo. Also, I will be trained on how to take care of Janie's Hickman cath. I'll learn how to do the dressing, flush the lines, etc.

Please pray that the chemo can kill the leukemia NOW and stay gone long enough for her to get to transplant.

Friends, I'm feeling 500 years old. I know you all are praying for our WHOLE familiy..beause I would not be able to get out of bed in the morning without your prayers. Thank you for caring for us and for "carrying" us through
this time.

I'll update you later.
Love, Janet

November 12, 2002 at 10:55 PM (CST)

Update 11-12-02
Well, friends, I didn't think I'd be writing this...but we had very bad news today. The bone marrow test that was done today did not look good. The bone marrow transplant is now postponed.

Here's how the day went...

Janie and I got to the hospital and checked into One Day surgery at about 7:30am. She was taken back for surgery around 10:30. When the surgeon finished replacing the old port with a Hickman external catheter, he came and told us she did fine. Then, they did the bone marrow aspiration and Spinal tap, then off to recovery. She was gone for about 2-3 hours but I'm not sure how much of that was surgery and how much was in recovery.

While Dan and I were waiting on her to come back, Dr. Berkow (our hematologist) and Pat Cotton( our nurse practitioner), came in to see us. They told us the bone marrow didn't look good and we would not be going to transplant the day before Thanksgiving like we had planned. They said if they did the transplant while she was not in a good remission, the chances of success were very low. We need to go back to chemo again to try to clean up the marrow before we go back to try to do a transplant. (We will hear a more detailed report on her bone marrow in the morning. By then we'll know how bad it is and we'll know whether to call this a relapse or that she's only in partial remission.)

So what's next? Well, after we sob and cry, then tomorrow she goes back to Children's Hospital to be admitted for 4-5 days. She will get high doses of Ara-C and Idarubicin. After that, I'm not sure, I'll have to check my paperwork and let you know.

Janie is doing fine and is at home now. She is a little sore from the surgery. After she came out of surgery this afternoon, the pain was bad and she was given demerol. That made her sleep the rest of the afternoon. We left the hospital around 6:30 tonight and she hasn't needed any pain medication since.

We are all home together tonight. I'm savoring having my whole family under one roof. So, just as we have done with all the obstacles this last year, we will rest tonight and begin the fight again in the morning.
Love, Janet

Monday, November 11, 2002

Update 11-11-02
Long day today...but everything is fine. We were scheduled to meet with the Radiation Oncologist and then a simulation of what to expect for the radiation treatments. Well, it's never that simple is it?? We did meet with the Radiation Oncologist, but also had a CT Scan (that we did not know we were doing today) and also some chest xrays done (also, we didn't know we were doing). As far as the simulation, well, that was not as thorough as I anticipated. We were there off and on today from 10am to 6:30 pm. Very long...considering I thought we'd be home by lunch.

Janie and I have to be at the hospital at 7:30 in the morning. She will have the surgery to take out her port and put in a line that will hang outside of her skin. She also will have a bone marrow aspiration and spinal tap. As far as I know, she will not have to spend the night.

On to some sweet news....On Sunday, Janie dressed up in her soccer uniform, went to the field, and accepted her soccer trophy!! Many of you know that she started soccer this fall. She went to one practice before she relapsed. She had to quit the team and never played a game. But she still thought of herself as being on the soccer team. I don't think she ever knew that the team has been playing games every Sunday for weeks. She is so proud to have a trophy just like her big sisters.

I have to run. I'll let you know about her surgery tomorrow.

Love, Janet

November 06, 2002

Update 11-06-02
Hey everyone. Long day yesterday. Here's what happened:
I started the day by telling Haley and Anna that their brother David was going to be Janie's donor. They were concerned for David and what he would go through, but felt reassured he would be fine. All Daniel understands at this point is that David had to see the doctor yesterday.
When Janie and David were riding to the hospital with me yesterday, we talked about how out of all our family, that he had the most special blood of all to help Janie. He was a little concerned about having to get more blood drawn, but Janie told him all the things she does to get through an arm stick, (squeezes her teeth, hold Mommy's hand, etc.) She made David feel much better.
When we got to the 6th floor, they loved that they had to scrub their hands down at the big sinks like the doctors do.
They both had their weight checked, blood pressure, temp, height, etc. They drew several tubes of blood from David. Dan held him and he did not flinch or cry. The nurses rewarded him with many stickers and a round of applause.
Janie was more upset. She cried, kicked, etc, but we finally accessed her port and drew several tubes of blood out. She also had an echocardiogram done. Then they had to stick these long swabs up her nose to check for infection. We weren't expecting that and had never done this. Several people had to hold her down for this and she screamed. When she was done, David went to her and gave her his Spongebob stickers. Very touching...and shows how loving David is.
We also saw her hematologist, got an EKG, and went to the dental clinic. She did have her 2 bottom front teeth pulled. They were wiggly and we needed them to come out and the gum heal before we do the transplant so we wouldn't worry about bleeding or infections. She was so tired by the time we went to the dental clinic that she was crying to go home. Somehow they managed to numb her and pull the teeth quickly. Nurses had to help hold her still.
Now that I've told you all the factual stuff, I'll interject some emotions. This was a very hard day for Janie. There were several scary, painful and new things she had to endure. I couldn't help but cry as one necessary but painful procedure after another was inflicted on my baby. By the time they were pulling her teeth, I had to cry. I cried because having her teeth pulled were painful. And, as I held her hand during it, I felt she was cheated out of the simplest childhood event as losing your first tooth. Strange, I know, for me to worry about that. But so many things she has missed out on because of the cancer.
Janie is fine today. She was happy because the tooth fairy came last night and she is practicing all the things she can do with her new gap where the teeth used to be. See, she got thru the pain and moved on. I'm still a basket case!!
Thanks for the prayers. If all goes well, I won't update again for about a week. Love, Janet

November 04, 2002

Update 11-4-02
Hello everyone. I have several bits of information I need to give to you. But keep in mind that everything I'm about to write is subject to change! That's one thing I've learned this last year.
First, the news we have kept for so long...The bone marrow donor will be David. Most of you know we had 2 possible donors with Janie's siblings. But after considering several more factors that I won't get into because of the technical nature, all the doctors and nurses feel David is the best choice. We are lucky to be able to have 2 possible donors and then pick and choose from those. Many patients do not have this blessed luxury.
At this point, David does not know too much. He is only 4 years old and we are trying not to scare him. We also don't him to feel the sole responsibility of saving his sister's life. If things didn't go well, he does not need to feel it was his fault. So basically, we will give him information as needed and we will make him feel special without feeling responsible. This will be a tough task for us.
Now to get to the upcoming events:
Tuesday, November 5th-Dan, David, Janie and I will go to Childrens at 8:45. Janie and David will both have more blood work done. Dan and I will meet with the transplant team. Then, David and Dan will probably leave. Janie and I will stay for the day to have her checked out by the cardiologist and have a dental evaluation. (She is at the age of loosing her baby teeth and has 2 loose teeth. The problem is if she loses these teeth and bleeds because of a low platelet count. Therefore, they may decide to go ahead and pull them now...we'll see.)

November 11th- We will meet with the radiation oncologist (with Janie present) and go over what to expect with the radiation.

November ? -probably around the 13th- Janie will have surgery to take out her current port and insert a different line. I'll tell you more about that later.

November 20th- Janie will have radiation treatments for 3 days, twice a day. We don't know yet if this will be out patient or in patient.

November 27th- the day before Thanksgiving- she will have the transplant. David will be taken to surgery to harvest his marrow from his hip bones. The marrow will be processed and then given to Janie like a blood transfusion. Thankfully, painless to her.

Then, we wait....

Thank you ahead of time for all your prayers, emails, letters, etc, etc. We are comforted and strengthened by your continued prayers.
Much love, Janet

Thursday, October 31, 2002 at 10:13 PM (CST)

I finally added pictures! Please check out the photo album!

Tuesday, October 29, 2002 at 12:56 PM (CST)

Update 10-29-02
Janie is home from the hospital! She is sleeping soundly on the couch. We will take her back in on Thursday for lab work. Thank you for all your prayers. Love, Janet

Monday, October 28, 2002 at 09:43 PM (CST)

Update 10-28-02
Janie is still in the hospital. The blood cultures they drew in the ER on Saturday are not showing signs of bacteria in the blood...so this fever is probably viral in nature. She has not had any fever since last night. If she does not have any more fever between now and tomorrow, they will probably let her go home on Tuesday.
Since she had the 2 blood transfusions, she is much more active and feels much better.
I'll keep you posted. Love, Janet

Saturday, October 26, 2002

Update 10-26-02
Janie had to go to the ER today and has been admitted to the hospital. She had a fever of 103, chills, and fatigue. Dan took her around lunchtime and they stayed in the ER for about 4 hours until she got into a room. They have given her 2 different IV anitbiotics and she is also taking the Bactrim she was already scheduled to take. She had an X ray of her chest also. They are checking her out thoroughly to try to determine the reason of her fever. Since her immune system is so compromised now, we have to be extremely cautious.
Dan did not have the results from the ER of the blood counts with him, but evidently they were not good because she is getting 2 blood transfusions tonight.
We don't know how long she will stay in the hospital. We may know more tomorrow. I will keep you posted. Love, Janet

October 20, 2002

Update 10-20-02
Everything has gone well this week. Janie is still in the hospital and has
tolerated the new chemo very well...no throwing up, nausea, etc. She had her
last round of the VP16 and ifosfamide today but will continue something called
Mesna for another day (in the hospital.) Mesna is given to protect the bladder
from harmful byproducts of the chemo. Hopefully she will be discharged
tomorrow
sometime. I'll let you know! Love, Janet

October 21, 2002

10-21-02
Janie is out of the hospital!! She is so happy to be home. She is not on any
home meds except Bactrim on the weekends and she has to have one shot a day in
her leg. This is not a deep shot like the aspariginase she has been having.
This is G-CSF, I'll explain later what this is. It is given similar to an
insulin shot. We are having nurses from our family come to our home to do
this.

Got to run for now. I'll write more later in the week. Love, Janet

Wednesday, October 23, 2002 at 2:20pm(CDT)

Janie will go in for labs only tomorrow. She has been getting GCSF shots at home and has been tolerating it well.

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