Ellie Grace Volk

January 26, 7am: Ellie is still throwing up.  She has not been able to keep anything down.  She is very weak and uncomfortable.  We are actually heading into the doctor right now.  I'll keep you updated. 

Here is a picture Tom took with his phone when we were in the ER on Saturday. 

I'll update as soon as we know anything.  Thank you so much for your continued prayers!

January 25, 1pm: Just a quick update to let you know what is happening in our house.  We spent the better part of yesterday in the emergency room with Ellie.  She suddenly started yelling that her tummy hurt.  She fell to the floor and was rolling around in pain.  She started saying, "Mommy, I need a doctor!"  Now, I have to tell you, Ellie can handle quite a bit of pain because of everything she has been through.  When she says she is in pain, I believe her and know that she is serious.  I grabbed her, pajama-clad, and threw her in the car and took her to the emergency room.  During our ride, she began throwing up continously.  Once we got to the emergency room, she began passing out.  She was extremely lethargic and couldn't keep her eyes open.  They did some tests on her and couldn't find anything wrong.  We had just had a CT scan 10 days ago, so we felt confident that they weren't going to find any surprises and they didn't.  They couldn't see anything that would be causing her problems.  They sent us home last night and told us to keep an eye on her and to come back to the emergency room if we needed to.  Otherwise, we are to go to our doctor on Monday. 

I stayed up with Ellie all night and she continued to throw up.  She would sleep for awhile and then wake up and throw up.  She would then go back to sleep.  That went on all night.  This morning, she is still complaining of stomach pain - just not as severly as she was yesterday. She is also still throwing up - just not as frequently.  We are hopeful that it is something simple, like stomach flu, and not something more serious.  (Can you believe we are hoping for stomach flu?!)

We will keep a close watch on her and keep you updated.  Thanks so much for any prayers you can send her way!

January 23, 3pm: Ellie is doing really good right now.  For some reason, her appetite has increased and she seems to be eating quite a bit more.  We are thankful for that!

A year ago, we were just starting radiation.  Radiation was one of my least favorite things during this journey.  It just seemed so cruel.  I know it was necessary and only helped Ellie, but I didn't like the process.

Originally, we were told we would have 20 days in a row of radiation.  In the end, they decided 6 days would suffice.  That was a blessing! 

For radiation, Ellie had to be in the room by herself, we couldn't be with her.  So we would get her all set in the room and then leave.  She would have to lay on this metal bed in this huge room, which was very sterile and cold.  It would take them a long time to line up exactly where Ellie should lay and where radiation would be administered.  After they had her all lined up, Ellie would have to lay perfectly still and we would all leave.  We could watch from a window.  Ellie looked so small in that room.  She only took up a fourth of the metal bed she was strapped to.  She would listen to the doctors and not move a muscle, but she would have a few tears that slowly fell down the side of her face as she laid there.   It was heart-breaking!

While she received radiation, we could talk to her through an intercom system.  I would read her books or just tell her stories.  Anything to take her mind off of what was happening. 

One of the reasons I didn't care for radiation is that it started so soon after surgery (which I know it needed to), but Ellie was so bruised and had many bright red scars on her body.  For radiation, they added to this by putting "X"s wherever they needed to administer radiation.  They put these "X"s on with a Sharpie.  She was already so beaten up and then they took a marker and wrote on my baby in angry looking "X"s.  I just wanted to grab Ellie and take her out of there!  Of course, everyone who worked in the radiation department was incredible and the technology is amazing.  I am not saying anything negative about any of that, I simply didn't want it done to my child.

The reason radiation needed to be done was to kill any microscopic cancer cells.  We had taken the tumor out and any little cancer cells that the surgeon could see, but we knew there were cells that we could not see.  They would radiate the area where her tumor had been and where any other cancer cells had been found.  It was a necessity to do the radiation.

After a radiation appointment, Ellie would begin throwing up.  Even with her prescription anti-nausea medicine, she would throw up many times.  She didn't get a break from this because radiation has to be done continuously.  So every day we would go back and subject her to this again.  One of the days that she had radiation, she also had chemo.  It was a long 6 days and quite a bit for a 2 1/2 year old!

One thing that I thought was interesting about radiation is that it stunts your growth a little bit.  So Ellie will be a tiny bit shorter than she would have normally been.  Because of this, they tried to do radiation evenly across her body so that she will not be lopsided. 

Because of the placement of her tumor, radiation had to be done very close to Ellie's right ovary.  As much as they tried not to, they had to damage that ovary and it might be difficult for Ellie to have children someday.  That is a tough one for a mom to take.  But I know that Ellie will not be dealing with that for 20-some years and we will cross that bridge when we get to it.  She will still have one good ovary and who knows what medical technology will have in store for us by that time. 

We are so extremely thankful to be talking about radiation a year later versus going through it.  We are grateful to be on the other side.  We are also grateful for your continued prayers and support.  I know I have said this before, but you cannot imagine how wonderful it is to go through your day and be stopped by people who ask about Ellie and tell me they are praying for us.  That is an amazing thing!   Thank you!!

We are thankful that God has truly answered our prayers.

"Hear my voice when I call, O Lord; by merciful to me and answer me."  Psalm 27:7

January 15, 2pm: Ellie's hospital visit yesterday went well.  It was just a long day for her.  She could not have anything in her tummy so we started the day with a hungry girl.  She was a good sport about it, though.

Here she is starting her adventure at the hospital at the wishing pond.

The nurses had her drink contrast liquid so things would show up well on her CT scan.  While she was in the process of drinking that, she had a check-up, they flushed her port, did blook work, and they put an IV in.  The IV was probably the hardest part of her day because they could not find a vein in her tiny hands.  They tried several and said that her veins are getting scarred from using them so much.  It was difficult to find one that worked.  While the nurses were trying several different veins, Ellie was not happy.  She cried a lot and kept saying, "Please don't do this!"  It just broke my heart.  Here she is getting the IV out, which was a much easier process.

After she drank the contrast liquid for 90 minutes, she had a CT scan.  She was great during this and laid perfectly still.  Here she is during the scan.

From her scan, we learned that everything looks really good.  They aren't seeing anything suspicious show up in the area where her tumor was and it all looks clean.  We were given the ok to schedule the surgery to remove her port.  That will most likely happen in February.  We are so excited!!

The only thing that is bothering the doctor a little bit is Ellie's weight.  We looked back in her charts and she is about the same weight that she was when she started this journey last January.  She lost quite a bit of weight during surgery, chemo and radiation.  She is now back to her starting weight - which is great - but she is now a year behind.  She weighs the same at 3 1/2 as she did at 2 1/2.  At her age, you just can't take a year off of weight gain.  But she has grown 2 inches in this year so her calories may just be going to her height.  They are going to watch her growth closely. 

We will keep you updated on when the surgery will be.  I just can't believe we may be closing the chapter on chemo and the port.  It really didn't seem like this year would ever get over.  We are so thankful that the doctors feel Ellie will not need any more chemo and that she is coming out of this long tunnel.   We thank God that he has lead us through this journey and hasn't left us for a minute.   

Thank you for your continued prayers and support.  It means so much to us!  Truly, we are very, very blessed!!

"Praise the Lord."  Psalms 113:9

January 11, 6pm:  Just a quick update to let you know that Ellie is doing really good.  A year ago, we would have been out of the hospital for a few days and we had a week to recover before starting chemo and radiation.  Radiation was truly one of my least favorite things in this whole journey.  I'll tell you all about that next week.

For now, we head to the hospital on Wednesday.  Ellie is getting many scans and tests.  It will be a full day for her.  But, the good news is, if everything looks good, they are going to schedule the surgery to take her port out.  That will probably happen in February.  That will be such a milestone for us.  It will mean that the doctors feel she will not need to go back to chemo.  We will also be glad to see it go for Ellie's sake.  Although she is used to living with a port, it hurts her when someone bumps it.  It is located near her armpit, so whenever you lift her up, you can feel it.  It's difficult to not accidently bump it or push against it too hard when we are lifting her.  She'll say, "You hurt my port!"  We will be glad to close the chapter on the port!

Today, I took Ellie to see the Sesame Street show that came to town (that's where she is in the picture).  At the end of the show, she turned to me and said, "Ok, let's go meet Elmo!"  I had to laugh because she had gotten so accustomed to meeting the characters at Disney World on our Make-A-Wish trip, that she thought we would do that today too.  At Disney, each show was followed by a backstage visit for Ellie.  She now just assumes that that is what we do after a show.  I told her that we would not be going backstage to meet Elmo.  She said, "But we always meet the people!"  Make-A-Wish was so good to us!  But I have to say, it was fun to be a "normal" person and not have a special issue that allowed us to go backstage.

Thanks for all of your support and prayers!  We will update and let you know how our appointment on Wednesday goes.  We are praying that all goes well and we can schedule the removal of the port. 

"I will tell of the kindnesses of the Lord, the deeds for which he is to be praised, according to all the Lord has done for us."  Isaiah 63:7

January 4, 10pm: A year ago today, Ellie had her surgery.  All day, I have been thanking God for allowing her to be with us today.  It seemed so unsure on Jan. 4th last year.  I know you can go to the beginning of our journal and read about the surgery, so I won't bore you with all of the details, but I will tell you a bit about how we were feeling.

We checked into the hospital at 10am for a noon surgery.  We had many scans and tests as they checked Ellie in and prepared her for surgery.  As noon approached, we were told the surgery before us was taking longer than expected and we would be starting mid-afternoon instead.  We had been in a small room waiting with Ellie and we asked if we could go out into the big lobby to wait.  Ellie was then able to run around and play with Mitchell and Lexie.  We were also joined by my parents, Tom's parents and Tom's sisters.  We all played with Ellie in the large lobby.  Ellie was in a great mood.

Finally, they came and got us about 4pm.  Our families were able to say good-bye to Ellie. Tom and I took her back to the pre-surgery area.  We gave her hugs told her how much we loved her and then we had to lay her on one of those rolling beds.  They promised to take good care of her and they began walking away with my baby.  I didn't know if she would make it through surgery and I couldn't believe I was letting them take her.  We watched her being wheeled down the hall.  They had given Ellie something to relax her, so the departure was easy for her - thankfully.  For me, it wasn't so easy.  I completely broke down.  I began sobbing and Tom had to hold me up. 

Tom and I stood in that hallway for some time. We prayed together and had some alone time.  Finally, we went back to the lobby to wait with family.  Shortly after they started the surgery, we were called into an office.  A scan of Ellie had shown a lump on her lung and they needed our approval to remove it.  If that lump was cancerous, that would mean she would have cancer in her kidney and her lung and her prognosis would be much worse.  We gave our permission and went back to wait.  Every hour, a nurse would come out to the lobby to give us an update.  Ellie's surgery ended up being 5 hours long.  Finally, the surgeon came out to tell us that the surgery was done and that Ellie was doing well.  He also had a camera with him and he told us he had taken pictures during the surgery.  He showed us a picture of Ellie after she had been opened up for surgery, but the tumor was still in her.  It was huge!  We could not believe that had been in her.  He showed us another picture after the tumor was removed.  She had a big opening inside of her and her organs are all pushed to one side.  They had been so crowded with the tumor in there.  We thanked him for saving Ellie and for being so thorough.  We know that cancer can be microscopic and he spent extra time making sure they had every little bit. 

They let us know that Ellie was on her way to Intensive Care and we could join her there.  We finally got to see her.  She was hooked up to many machines and she looked so tiny.  Our family members each get a chance to see her for a minute and then they left for the night.  I stayed with Ellie that night.  They only had a hard bench for me to sleep on in her room, but I didn't care.  I couldn't leave her. 

Neither Ellie or I slept much as she cried out a lot during the night.  She wanted me to hold her.  I wanted so much to pick her up and comfort her, but she was hooked up to too many machines.  I could only rub her and talk to her.  That night, I laid there and listened to the machines beeping in the other children's rooms who were in the ICU.  When one would start beeping a certain way, all of the nurses would go running into that child's room.  I could hear them working on different children and, for some of the kids, trying to keep them alive.  During the night, a helicopter landed on the roof and a new child was brought into ICU.  It was amazing to me what those nurses do every day.  It was very intense.  Thankfully, Ellie did not have any problems during the night.   Sometime during the night, our surgeon came in to check on Ellie.  He had just finished a surgery that he had started after Ellie's.  He had done 3 surgeries on children that day - each lasting about 5 hours.   Again, I was just amazed by what these medical personnel do on a daily basis.  We thank God for them!

So that was our day a year ago.  It was a long, exhausting day with so much emotion.  But we were thankful to have the opportunity to save Ellie.  Just a few short years ago, medical technology was not as advanced as it is now and who knows if we would have had the same outcome.  We thank God that He allowed us to find her cancer and that we had the technology to remove the tumor.

The pictures I am including today are of Ellie in ICU at this time last year.  I am writing this at 10pm and that is about when Ellie arrived in ICU.  The other picture is of her today after church. 

I have to tell you how we ended our night last year.  Early in the morning, the phone in our room rang.  Tom and I had been communicating by cell phones, so I couldn't imagine who would be calling our room.  I answered and a voice loudly proclaimed, "God is so good!"  I said, "Yes, He is!"  The lady on the other end, hearing my voice, realized she had the wrong number.  I assured her that it was a wonderful mistake because it was a great way to start our day.  Ellie and I were alone in the room as the sun was rising and that long night was ending.  It felt great to be reminded - even by a stranger - that God is indeed so good!!

"Weeping may remain for a night, but joy comes in the morning." Psalm 30:5

January 3, 11am: We are so thankful to welcome in 2009!  Although we learned a lot during 2008 and had so many positives and blessings, it's still nice to get a fresh start.   I'm sure we'll remember 2008 as our "cancer year."  That is, thankfully, behind us.

Last year on Jan. 3rd, Ellie had been diagnosed and we were waiting for our upcoming doctor's appointment, which was still several days away.  Our appointment was to consult with the doctor who would do Ellie's surgery.   The waiting was very difficult.  We knew Ellie had this tumor inside of her and we just wanted it out.  Suddenly, on the 3rd, we received a call from Children's Hospital and the surgeon had an opening that afternoon.  They wanted to know if we could come to Omaha right away.  Of course we said yes and dropped everything. 

When we sat down with the doctor, he showed us Ellie's tumor on film.  He explained the surgery and told us what the process would be.  He is the only doctor at Children's Hospital who removes Wilm's Tumors.  He said he sees about 3-4 cases a year.  It's not very common.  As we talked about getting the surgery scheduled, the surgeon said, "What are you doing tomorrow?"  He happened to have an opening and he said "Let's get that tumor out of her."  We agreed!

We ran home and frantically packed.  We knew we would be in the hospital for about a week.  We called and got the kids out of school for the next day as we knew they would want to be there with us.  We called our families and many of them made plans to join us the next day.  And we created this website that night.  Very last minute.  We wanted a way to disperse information quickly.  I really never expected anyone besides a few family members to get on it!

As we got ready that night, we had a flood of emotions.  We were so excited to get the tumor out, but we also knew we were facing a major surgery.  We were very nervous and anxious about the next day.  I don't think Tom and I slept at all.

I will update tomorrow and tell you about our long surgery day last year on Jan. 4th. 

I also wanted to update you on our Make-A-Wish fundraiser.  We made it!  Thank you so much to everyone who contributed.  We are very excited that we are going to help fund the wish of another child.  I will keep you updated on where our money will go.  I am excited to find out how they will use it!  How wonderful that another child will be blessed.

A special thank you to all who joined our fund-raising efforts: Kim, Tracy, Janet, Michelle, Diane, Jenny, Jan, Amy, Sue, Wendy, Rita, Becky, Addie, Rita, Kim, Patricia, Kathy, Ann, Judy, Jamie, Nancy, Annie, Rhonda, Cynthia, Sally, Susan, Kay, Darla, Valarie, Becky, Jacqueline, Norma, Laura, Christina, Melony, Jennifer, Kelly, Cheryl, Patty, Bonnie, Allison, Nicci, Amy, Kerry, and Audrey.  We are very grateful to all of you.  Your generousity, kindness and compassion is overwhelming.  Thank you.

"I lift up my eyes to the hills - from where will my help come?  My help comes from the Lord who made heaven and earth."  Psalm 121:1-2

December 28th, 7pm: Today is the anniversary of Ellie's diagnosis.  One year ago today we learned she had cancer.  Allow me to tell you what our day was like last year. 

Over the Christmas break, I had been reading to Ellie and was rubbing her tummy.  I felt a lump.  We decided to take her into our doctor to see if it was anything serious.  He felt the lump and wasn't sure what it was, but wanted us to go to the hospital and have an ultrasound.  We went straight to the hospital and had the ultrasound.  As we arrived back home, the hospital was calling and wanted us to come back in the morning for a CT scan.  That was the first time we felt this might be serious.  We went back to the hospital the next morning and had the CT scan.  During the scan, Tom and I were able to be in the room with Ellie while the technician was in a separate room behind glass.  During the scan, Tom and I both happened to look back at the technician and we both saw his face drop as he looked at the screen.  He didn't have a very good poker face and we could tell that he saw something bad.  He came out of the room and was visibily shaken.  He told us he couldn't tell us anything, but that our doctor would call us soon.  He then told the nurse to get Ellie a gift.  She came back with a small teddy bear.  He said, "That's not good enough!  She needs a much better prize!"  We assured him that the bear was great and we left.  We were almost to the parking garage when the technician came running up behind us.  In scrubs, he had run through the entire hospital to get to us and give Ellie a better gift.  He had a huge box in his hand which held a beautiful baby doll.  He told us that she deserved a wonderful gift.  At the time, we thought that was a bit strange, but now we know that he had seen the tumor in Ellie.

After we got home from the CT scan, we received a call from our doctor and he asked us to come into his office to talk.  That was another sign to us that this wasn't good.   Now, let me tell you about Ellie's doctor.  He is a good friend of Tom's.  They were fraternity brothers in college and have known each other for years.  He had the unenviable task of telling his friend that his daughter had cancer.  We felt bad for him that he had to be the one to tell us, but we were also glad to have a friend tell us.  He took all of the time we needed and answered all of our questions.  In his career, this was his first case of Wilms Tumor, which is kidney cancer.  We learned that the lump I felt on Ellie's tummy was a large tumor that had started in her kidney (which are on the back of the body) and had grown through her body to be making that lump on her tummy.  We learned that the tumor had completely destroyed her kidney and that her body had been functioning on one kidney.  We were told that she would need surgery to remove the tumor and the kidney and we were given the date of an appointment with a specialist at Children's Hospital in Omaha.

I remember the drive home from the doctor's office.  People were out having fun... shopping, walking around, sledding... enjoying Christmas break.  I remember thinking, "What's wrong with all of you people?  Don't you know my child has cancer?!"  I couldn't believe the world was going on as normal.

We got home and sat Mitchell and Lexie down.  It was hard for them to comprehend that Ellie was so sick.  We sat at the kitchen table and talked for as long as they wanted.  They had many questions and we didn't have very many answers. 

We then started the phone calls to family and friends.  The first call I made was to my mom.  As soon as I heard her voice, I began sobbing.  I couldn't get any words out.  I heard her keep asking, "What? What?" but I couldn't talk.  Tom had to take the phone and tell her that Ellie had cancer.  We spent the rest of the evening and the next day making phone calls.  Tom did the majority of them since I was having trouble telling the story.  Each phone call brought new tears.  Just when we thought we were composed, we would re-tell the story to someone new and begin crying again.  I remember being in a bit of a fog.  It didn't seem like it was truly happening.  I could hear myself telling people that Ellie had cancer, but I don't think I was really believing it in my heart.  It seemed so unreal.  I was waiting to wake up from the nightmare or to get the call from the doctor's office that they had made a mistake.  But that call never came.

I really can't believe it's been a year since that day.  On one hand, it seems like just yesterday, but on the other hand, it seems like a lifetime ago.

We have learned so much during this year.  We have learned how truly great our God is.  He has blessed us immensely this year.  He has allowed us to learn many lessons.  We learned that God truly is full of love, mercy and grace.  He allowed us to keep Ellie.  We learned to lean on Him.  We learned to trust Him. 

We also learned to get our priorities in line.  We learned that you never know what the bend in the road may bring.  We are only promised today.  We learned to have faith and believe in miracles - against all odds.  We learned to see the positive and the blessings in all things.  Each day we had with Elile was a gift.  We knew that Ellie could have been taken from us at any point.  So any time we had with her was a gift.  Any time we had as a family was precious. 

We learned how truly amazing people are.  We could not have made it through this year without the prayers and support of those around us.  We always believed in the goodness of people, but this year showed us how incredible people truly are.  We are humbled by the generousity, compassion, and kindness of those around us - and of total strangers.  We were supported in a way we never expected.  It made us want to be better people. 

So thank you!  We are so grateful for the prayers, the cards, the gifts, the support, the kind words, the meals... everything.  You have blessed us.

"Trust in the Lord with all of your heart and lean not on your own understanding; in all your ways acknowledge Him, and He will make your paths straight."  Proverbs 3:5-6

 
 
Christmas Eve Day:

We wish you a very Merry Christmas!
 

"While they were there, the time came for the baby to be born, and she gave birth to her firstborn, a son.  She wrapped him in cloths and placed him in a manager, because there was no room for them in the inn.  And there were shepherds living out in the fields nearby, keeping watch over their flocks at night.  An angel of the Lord appeared to them, and the glory of the Lord shone around them, and they were terrified.  But he angel said to them, 'Do not be afraid.  I bring you good news of a great joy that will be for all the people.  Today in the town of David a Savior has been born to you; he is Christ the Lord.  This will be a sign to you: You will find a baby wrapped in cloths and lying in a manger.'  Suddenly a great company of the heavenly host appeared with the angel, praising God and saying, 'Glory to God in the highest, and on earth peace to men on who his favor rests.'"  Luke 2:6-14

December 19, 11am:  We went to the hospital on Wednesday for Ellie's monthly check-up.  I thought I would share with you a day in the life of Ellie on these days.  We are past anything too traumatic (like chemo or radiation) and are on to "easier" doctor visits (Ellie might disagree with that statement).  Since we don't have anything too graphic that we deal with anymore, I thought I would show you our day in pictures.  So here is our latest hospital visit:

Ellie has to wake up extra early to get to the hospital.

Ellie is a "big girl" (her words) and can take her anti-nausea medicine by herself.

I put numbing cream on her port so it won't hurt later when they put a needle in it.   

 Ellie's early morning drive to the hospital.  It takes us about an hour to get there.

We get to the hospital and Ellie gets weighed.  She has gained almost a pound since last month!

   
She also gets her height measured.  She grew a little bit!

Next she gets her blood pressure taken while they also take her temperature.

Ellie now has a little time to play a board game.

It's time to have her port accessed.  This is Ellie's least favorite part.  They need to put a needle in her port and draw blood out.  They also flush out her port.  During the flushing, Ellie gets a bad taste in her mouth.  The nurses say it tastes like pennies in your mouth during this.  

Smiles when it is all over and a band-aid is put on her port. 

Ellie has time to play again as we wait for the bloodwork report to come back.  She makes a new friend, Ava.  Ava was diagnosed with a form of leukemia in October.  Ellie and Ava are a week apart in age.  They decide to play that they are both doctors.

  
We go back in to see the doctor for a thorough check-up. 

After our appointment, we go to a fun restaurant and Ellie gets her favorite: garlic bread!

That was our day!  We were very thankful that Ellie had grown and that her bloodwork all came back looking great.  Next month, they have scheduled many scans and tests for Ellie.  It will be a full day and won't be as "easy" as this one was.

During this season, please say a special prayer for all of the kids who are in hospitals across the country as many of them will be spending Christmas in the hospital.  There are some amazing, brave kids facing some very scary things.  Please say a prayer for strength and peace for them and their families. 

We thank you for your continued prayers for us.  We are so grateful for your support.

This verse comes to you from Lexie: "Come to me, all you who are weary and burdened, and I will give you rest."  Matthew 11:28

December 14, 5pm: Forgive me for not updating for a week.  The time seems to be flying by right now, doesn't it?!  I will update more this week because we have a couple of events coming up.  First, Ellie goes in for her monthly hospital visit on Wednesday and then tomorrow, Ellie and I are going to be on the news doing a small interview about Make-A-Wish.  I'll let you know how both things go!

Speaking of time going fast, that is my biggest struggle right now.  Ellie was diagnosed last year right after Christmas and I promised myself that this year, I was going to slow down and truly enjoy the holidays.  I wouldn't rush so much or get caught up in buying presents, decorating the house, or all of the other activities that can get us sidelined from the real reason for Christmas.  Last year, I was so enveloped in all of those things and it all seemed important.  But then, just 3 days after Christmas, we were told that Ellie had cancer.  It made me really stop and think about what I had just spent the last several weeks focused on.  It was certainly a wake-up call. 

So this year, I was determined to focus on Jesus' birth; on my family; and on giving to others.  I still find myself being pulled in different directions, but I try to slow down and just refocus.  For example,  Ellie loves to redecorate the tree.  Now our tree has been decorated for weeks, but Ellie likes to pull the decorations off the bottom third of the tree and then she says to me, "Mom, let's decorate the tree again!"  Now, the old me would have (1) been upset that she "messed up" the tree or (2) been too busy to play the same silly game AGAIN.  But, this year, I happily sit down with her under the tree as she asks me, "Do you think we should put this bulb here or here?"  She loves to decorate it again and again.   Now, our tree is certainly not as pretty as it was when we first decorated it, but I just don't care.  I love Ellie's touches to it and the best part is that we are spending time together and having fun.  A "perfect" tree is simply not that important.

Neither are presents, the food we'll serve, the clothes we'll wear.... or all of the other trappings of the holidays.  It just isn't as important as Jeus being born.  Not even close!

In the children's message today at church, our Children's Director gave each of the children a small mirror that said, "I'll reflect Jesus!" on the back.  She explained to them that that is how we can show Jesus' love to others: by reflecting Jesus to them.  It can be easy things, like holding a door open for someone at a store.  Or sending a hand-written note to someone who would love the mail.  Or just extending courtesy to those around you.  Or sharing a smile with a stranger.  There are so many ways to reflect Jesus' love to others.  And we each have the power to share His love.

So let me share His love with you by thanking you and telling you how important you are to us.  We are blessed by your prayers.  We thank you for continuing to follow Ellie's story and supporting us.  We could not have endured this journey without you.  We are extremely appreciative to each of you.

"Your love, O Lord, reaches to the heavens, your faithfulness to the skies."  Psalm 36:5

December 6, 9pm:  Ellie had a big day today.  First, we attended the Star City Parade this morning.  Make-A-Wish families were invited to view the parade from a skywalk above the street.  It was an incredible place to watch a parade (and very warm too!).  Here are Ellie and Lexie enjoying the view.

Next, Ellie had her Christmas program for preschool.  It was a sweet program.  Below is Ellie before the show.  I was the mom in the audience who kept crying.  I am sure those around me thought I must have been really moved by the program, but I just kept thinking how blessed I was to be sitting there.  To have Ellie be healthy and in a Christmas program.  It hasn't even been a year since she was diagnosed and there she was singing and doing her little actions.  It was amazing to me. 

Also today, an enormous tree was put up in the Old Post Office Pavilion in Washington DC.  It is covered in thousands of gold ribbons.  Each ribbon holds the name of a child who has battled cancer.  We purchased a ribbon and had Ellie's name put on it.  We had them inscribe, "In honor of Ellie who has bravely battled cancer.  You are our hero and we thank God for you."  After the tree comes down, they will send us the ribbon.

So, a big day today!  As I am writing this, Ellie is still twirling around in her dress from the Christmas program.  She refuses to take it off because she says she looks like a princesses (she even made Mitchell be the prince!).  

I am off to put her to bed and I will leave you with a verse my new friend Sally sent me in a card, "Rejoice in the Lord always.  I will say it again: Rejoice!"  Philippians 4:4