Ellie Grace Volk

 Jan. 12, 1pm: The Children's Ministry Director at Orchard Baptist Church in Loveland, CO, has asked me to post a photo for her.  Her Sunday School group made the Prayer Bears (described in the posting below) that were sent to Ellie.  She wanted to see a photo of Ellie with the bears so her Sunday School kids could see where the bears went and see how they shared God's love.  They will be talking about Ellie's story on Sunday.  I am happy to share a photo!  Here is Ellie last night - in her pj's -  with the Prayer Bears.

We will be taking some of the Prayer Bears with us to the Children's Hospital in Omaha on Monday so Ellie can hand them out to other sick kids.  Thank you!

Ellie is getting stronger and stronger.  We are having a fun weekend with her: playing games, reading books.  Her new favorite game to play is to be "Dr. Ellie" to her stuffed animals (I am "Dr. Mommy").  She talks to them just like the nurses talked to her: "This will just be a small pinch, Honey!",  "Take your medicine like a Big Girl!"...

Have a wonderful weekend and we'll update on Monday when we go to Omaha to start chemo.

Jan 11, 1pm: Our chemo appointment has been moved from today to Monday.  We are fine with this as it gives Ellie the weekend to get stronger before we start.  So not much news to tell you today. 

But I did want to share a story with you.  Yesterday we received a huge box.  Neither Tom nor I recognized the return address.  The box was from Group Publishing in Loveland, CO.  Somehow our website had made it all the way to them and a group of employees have been following our story.  This group of ladies sent gifts for Ellie (Pooh bear, puppet, Bible story book) and gifts for us (restaurant gift cards).  Along with those gifts, the box was full of prayer bears.  These bears were made by one of the gal's Sunday School class.  The small bears are made in fabric that says, "Jesus" all over it and has hearts on it.  They have a small pocket where a note has been placed by one of the children in the Sunday School class.  The letter in the box told us that these bears are meant to help little ones pray and to know that God and other people love them.  The ladies asked that we each keep a prayer bear and pass the others on.  We have decided to take them with us when we go to the Children's Hospital to hand them out to the other children there.  

Tom and I were amazed by the generousity of this group of ladies.  We are strangers to them, and yet they went out of their way to do something special for us.  What a loving act of kindness.  And what a lesson for me.  I know I have been guilty of hearing of a stranger going through a bad time and I stop and say a prayer for them, but then move on.  This group of ladies taught me how you can truly touch someone's life - whether you know them or not.  So thank you to: Tory, Judy, Carolynn, Teresa, Mary, Donna, LouAnn, Ruth and Shelly.  We appreciate you!

Thank you all for blessing us every day with your comments.  Tom has had Psalm 118 on  his mind a lot lately and wanted me to share the first verse: "Give thanks to the Lord, for he is good; his love endures forever."  

We are so thankful!  To Him and to you!!  Thanks for walking this journey with us.  We will continue to update. Make it a miracle-filled day!!

 Jan. 10, noon: Just a quick update today.  I hope to have more info tomorrow when we go back to Omaha to start chemo.  Today we went to our doctor as Ellie had some skin tests that needed to be read.  The lump they took out of her lung is puzzling them a bit.  They did some tests in the hospital that needed to be read today.  They all came back negative.  So they are eliminating things it could be.  We will get more pathology tests back today or tomorrow on the lump.   

Ellie is doing great.  A little tired and sore, but happy.  Her tummy (where she had surgery) hurts when she tries to climb up on chairs/bed/couch... but instead of letting me help her, she is insistent on doing everything herself.  So she will wince and whimper a bit as she climbs up on a chair, but she'll keep saying, "I'll do it myself!"  Love her determined spirit!

We will keep you updated as we begin the next phase of our journey tomorrow.  As always, thank you for the prayers!! 

Jan 9th, 9am:  I am so full of emotion this morning.  It was amazing to be in our own beds last night.  As I write this at 9am, Ellie is still sleeping.  She was getting used to nurses coming in every 30 minutes - it must feel so good to just sleep!  I also wanted to share with you some photos from yesterday. 

Here is Ellie in the hospital playroom:

She is feeling so good right now.  It breaks my heart to think that she will soon be wiped out with chemo.   I wish we could just stop this process right now and let her heal and get back to life.  But I know that can't happen. 

I also wanted to share the picture below to show you how Ellie endured most procedures.  Here she is getting an EKG:

She was happy, sweet and kind to the nurses and doctors.  She didn't complain.  Every once in awhile when she felt a nurse was taking too long to do a procedure, she would loudly proclaim, "You're done!"  Otherwise, she was so amazing.  Several medical personnel commented that they liked coming into Ellie's room because she was such a happy girl.  I think that is part of the reason we are going through this.  So Ellie can be an inspiration.  It has certainly taught me much!  I saw Ellie choose to be optimistic and happy.  She dealt with the situation she was given and made the most of it.   Every night when we said  prayers in the hospital, Ellie would add her, "Jesus, I love you!" to the end.  It was incredible to see this girl with tubes and machines hooked up to her proclaiming her love for Jesus. 

As my friend Annette said, "Look what Ellie has done for all of us?  She has created so much prayer... it's like Ellie is our teacher.  She has brought my boys around the dinner table more often than normal for prayer.  Thank you Ellie!" 

Of course, Ellie is not the only lesson here.  YOU are teaching me so much.  The outpouring has been so amazing.  We created this website the night before we went into the hospital to simply let family know what was going on.  I never imagined that it would be seen by so many people.  The circle of people praying for us has been overwhelming.   The number of you praying for a little girl you don't know is so inspiring to me.  God has used this situation to teach me much!  I am humbled by how much I don't know.

When we learned Ellie had cancer, I knew God had a plan for her.  He has known she would have cancer from the beginning.  This has been part of His plan.  Of course, we cannot understand His plan - and it's not our job to - we can only know that He holds us all in His hands.  I know He has Ellie firmly in His grip and wheverever this journey takes us, we will be blessed.  I once heard this analogy: if the length of time we are going to be in heaven is like the distance from LA to NYC, then our life on Earth is about an inch long.  Our short time here is to be used to teach our children (and each other!) about God's love, to be a blessing to others, and to spread joy and love.  What else is there?   I know this all has made me slow down and look at what is really important. 

There are lessons everywhere.  As my friend Suzie said, "I think one of God's purposes in this is let all of His faithful know that there is a community of believers all over the country who will pray together, hope together and love together."

So thank you for praying, hoping, and loving with us.  And a special thank you to all who made our homecoming last night so special.  We were greated by balloons and a large, "Welcome Home Ellie!" sign.  A girl's devotional Bible was in a box outside and the card simply said, "From an Angel".  Our mailbox was overflowing with cards and gifts.  We were stunned by the outpouring.  Thank you!!

I will continue to keep you updated.  Let me leave you with one final picture.  This is Ellie in the car ride home last night with her brother Mitchell (14) whom she calls Yippy and her sister Lexie (12) whom she calls Lulu.  

Much love to you!

Jan. 8th, 5pm:  We are going home!  They just released Ellie.  I feel like our prayers have been answered.  We are excited to get our baby back in her own bed.  We will start chemo on Friday.  Ellie will receive 3 different chemo drugs.  She will also receive radiation.  We will travel to Omaha 1 day a week for 6 months for the chemo and radiation.  The oncologist told us that within 6 weeks,  Ellie's beautiful blonde hair will all be gone.  That is a small price to pay for a healthy girl!   We know God only gives us as much as we can handle and I'm sure we will all be able to handle what the next  6 months brings us.  I will update when we arrive home.  Thanks so much for the strength you have all given us!!

Jan. 8th, 10am: Surgery went great.  The doctor was not able to reposition her chemo port, so he took it out and put in a new one.  We were surprised to see her after surgery because she looked so much better than see did after surgery on Friday.  She was wide awake and asking the nurses to get her a mirror because she wanted to see how she looked in her surgery cap.  She is feeling great and we are so thankful!  We will keep you updated today as she has more tests and, hopefully, goes home!  Thanks for all of your prayers and kind words.  We appreciate you!!   We are so amazed at God's love and how He has sustained us.  Miracles are happening everyday. 

Jan. 7th, 7pm: What an eventful day we have had!  First, Ellie has walked!  Tom and I stood her up and each took a hand.  We stood beside her and waited for her to get herself steady.  She looked up at us and said, "Walk!  Let's go!"  I guess we were holding her back! 

 After getting some of her reports back, her cancer has been classified as Stage 3.  She will need to have both chemo and radiation.  We will learn more about her chemo treatment (how long/type....) tomorrow.  For now, they want her to get stronger before they begin chemo. 

The port that they put in for chemo which had flipped up and was not positioned where they wanted, will need to be moved.  They are going to do surgery at 7:30am tomorrow to fix that.  It will not be a complicated surgery, but they will need to put her under again.  We are looking at that as a small setback.  We are grateful for all of the other victories! 

The lump on her lung - which was not cancer - is some type of inflammation.  They will need to do some tests to determine exactly what that is.  She will have those tests tomorrow.  They don't want to start chemo until they determine if she might have some type of infection. 

The other amazing news we got today is that Ellie might go home tomorrow!  They are going to see how everything goes tomorrow, but if she continues to heal at the rate she is now, she will head home. 

We are so thankful and overwhelmed by the continuing great news.  God is so good!  Miracles truly do happen.  Tom and I have been on our knees thanking the Lord.  It's been amazing.  And our thanks to you.  You all have held us up and supported us and we are more grateful than you can ever know.  The Lord has brought so many people into our circle of influence and we are extremely grateful.  This experience has forever changed us.  Have a wonderful evening and we'll update you tomorrow after surgery. 

Jan. 7th, noon: We have had a great morning!  Ellie was given the ok to eat regular food.  Up until today, she could only have apple juice and popsicles.  And she had had quite of enough of those.  For breakfast, she immediately wolfed down two pancakes!   She has also taken a few rides in a red wagon.  She is excited to get out of bed and out of the room.  She may be able to get rid of the epidural giving her pain medicine today.  We are also hoping to walk today and may make it to the play room.

I wanted to share a few photos with you from our journey:

Below is a photo of Ellie when we first arrived at the hospital.  She has on her hospital pj's and the princess tiara the nurses gave her.  Notice Daddy has on the princess earrings! 

Below are two photos of Ellie right after surgery in intensive care.

 Below is Ellie sitting up for the first time in 2 days.

We are having one small concern.  The port that they put in to use for her chemo has moved.  It was facing down in her body and it is now flipped up.  They are attempting to manually move it, but it they cannot, they may have to go in and do surgery to move it.  We are hoping that won't happen.  We will update the site later as she walks and makes more progress.   

Make it a miracle-filled day!!

Jan. 6th, 11pm: Ellie had a great day.  She is gaining strength and talking a lot.  She wasn't quite strong enough to walk today, but she did sit up for the first time.  I was also able to take her out of bed and hold her for the first time which was pure joy for me!  

We have taken many pictures of our journey which I wanted to share with you tonight, but I cannot seem to get them to download.  I will tackle that in the morning and share some photos of Ellie from the hospital with you.

I have to tell you that Tom and I are brought to tears when we read your comments.  God has richly blessed us with such an incredible circle of friends and family.  You overwhelm us with your compassion, generousity, and love.  Thank you!

Thank you also to the Pastors and congregation of Christ Lutheran!  This morning at our church services, Ellie's picture was put up on the big screen and a special prayer was said for her.  Then, during communion, bright pink bracelets were handed out so everyone could wear a special reminder of Ellie on their wrist.  Tom and I were so touched to hear that story.  My brother attend the service and brought us all bracelets.  I will not only pray for Ellie when I see my bracelet, but I will pray for thanksgiving for all of you.  God has surrounded us with amazing people to worship with and an incredible church staff to lead us.  We appreciate you so much!!

Jan. 6th, 9am: Ellie had a restful night.  She is much more awake and talking a lot.  She is starting to have questions: "Why am I in this bed?"  "Why are we here?"  "When are we going home?"...  One funny thing: she had a cathater (sp?) in which they took out when she left intensive care yesterday.  They put a diaper on her and checked it all day yesterday.  It was always dry.  By last night, they decided to put a catheter back in.  They found her bladder to be completely full.  They emptied her bladder, took the catheter out and a diaper back on.  She looked up at the nurses and said, "I don't go potty in a diaper because I am a big girl!"  She had been choosing not to go!  So the nurses brought in a potty chair for her the next time she had to go and lifted her out of bed and sat her on it.  She said, "I don't use a potty chair anymore.  Big girls only use the big toilet."  So our feisty girl is coming back!  She is going to need that spunk because we have quite a fight ahead of us.  But we are taking it one day - actually one hour - at a time.  We celebrate every small victory.  Our victory so far this morning is that they took her chest tube out.  She is now only hooked up to her pain medicine.  It's nice to see all of those tubes and machines go away.  Our goal today is to get Ellie out of bed and walking.  We will update later today.  Blessings to all of you on this beautiful Sunday!!

Jan. 5th, 8pm: Ellie is doing great.  She was able to have a popsicle and some apple juice.  Our daughter, Lexie, found another 413 reference (our room #): Psalm 41:3: "The Lord will sustain him on his sickbed and restore him from his bed of illness."  It is not a coincidence that we are in this room!  We are looking forward to another restful night for Ellie and will update the site in the morning.  Good night and thank you!

Jan. 5th, 4pm: We have been moved from Intensive Care and are in a regular room.  Ellie has been detached from many of her machines.  She is resting comfortably. 

We have been moved to room 413.  That struck Tom as very profound as Philippians 4:13 says, "I can do everything through Him who gives me strength."  The Lord is giving us strength as each of you are too!  We'll update again soon.

Jan. 5th, 9am: We had a restful night.  I was able to stay in Ellie's ICU room with her.  She woke a few times and said, "Hold me Mommy!" - which I would have loved to have done, but she is hooked up to too many machines.  So I just rubbed her head and sang to her.  Other than that, she slept deeply and was comfortable.  Her vital signs all look good. They are hoping to move her out of Intensive Care today.  We will update you as soon as we get more information.  I began to read your comments this morning (I was too emotional yesterday to get through them) and I am so overwhelmed by your support.  How blessed we are to have such a circle of friends and family.  Thank you from two very grateful parents!  And especially thank you for "storming heaven with prayers" as my friend Ann would say.  A miracle truly happened yesterday and it was the Lord answering prayers.  I felt so helpless as a mom to not be able to take the pain away from my baby.  But your prayers lifted us up and we felt your love.  Thank you!! 

9pm Update:  Surgery is over!  Praise the Lord!  The doctor just came out and updated us and said the surgery went well.  They did have some complications because the tumor was invading a main vein, the venacava, so her body had produced several other veins to help blood flow.  Those veins were wrapped around the tumor and made it more difficult to get out.  They feel confident they got the tumor all out.  We saw pictures of it and it was huge.  As far as the lump on her lung, they removed it and feel confident that it was not cancer.  Thank you God!  Ellie is now in recovery and they are removing her breathing tube.  She will then head to intensive care where we will be able to see her.  We will update the website tomorrow to let you know how she is doing.  Again, thank you so much for your prayers and thoughts.  We are so blessed to have you in our lives and to be supporting us in this time of struggle.

7pm Update: They have the kidney and tumor out!  We are now 3 hours into surgery.  It will take another hour to close her up and then they will begin removing the lump on her lung.  She is stable and tolerating everything really good.  We hear your prayers!  Thank you so much.  We are blessed to have you all praying and supporting us.  You'll never know how much it means to us.

5pm Update: Ellie is mid-surgery.  Everything is going well so far.  We have had one minor setback.  Ellie had a CAT scan this morning and they found a nodule on her lung.  They aren't sure if it is cancer, but they will be removing it during surgery.  They will have the tests back early next week on it.  If it is cancer, she will be in Stage 4 cancer and will have much more aggressive chemo than we thought.  The OR nurse is updating us throughout this surgery and doctor is currently taking the tumor and kidney out.  After that, he will take out the lump on her lung.  Our little sweetie is handling everything really well.  She went into surgery bravely.  Mom didn't do so well.  I completely broke down as they wheeled her away.  I just know that it is in God's hands at this point.  He will see her through.  I will update when surgery is over.  Thank you all for your prayers. 

Jan 4th Update:  It is 2:45pm and we haven't started surgery yet.  The surgery scheduled before us was a bit more complicated than they expected and is still going on.  We are expecting to start surgery in the next 30 minutes.  Ellie is doing great.  We have been at the hospital since 10am and she hasn't complained at all.  She has on her little hospital gown and the nurses gave her a princess set so she also has on a crown, high heels and a necklace.   We can feel all of your prayers!  We so appreciate your support and we keep you updated when we go into surgery.  Much love to you!!

Jan. 3rd: Hello!  We created this website so friends and family can stay updated

on Ellie's journey.  We thank you so much for all of the prayers, support and love we have received since getting Ellie's diagnosis.  The outpouring has been overwhelming.  Thank you!  We are truly blessed.  

Here is the history of what has happened so far: over Christmas break, we found a lump on Ellie's tummy.  We took her into our doctor who sent us to the hospital for an ultrasound.  After the results of the ultrasound came back, we were sent back to the hospital for a CAT scan.  When those results came back, we were called into our doctor's office and received the news that Ellie has a tumor on her kidney.  It is called a Wilms Tumor and it is cancerous.

Today, Jan. 3rd, we went in for a consultation with the surgeon at Children's Hospital in Omaha, and we decided to schedule

surgery for tomorrow, Jan. 4th, at noon CST.  The tumor is quite large (the doctor said larger than a softball  - which is huge in her 30-pound body!).  The surgery will last 3-4 hours and we ask for prayers during that time!  She will need to stay in the hospital 5-7 days and then begin chemotherapy.  We will learn how aggressive the chemo will be after they remove the tumor and are able to test it.  We were very impressed with the surgeon and everyone we met at Children's Hospital.  We feel very confident in their abilities. 

Here's what we know for sure: God has a plan for Ellie.  We

feel peace and comfort know ing that God has her in His loving hands.  We know he will be watching over Ellie and guiding her doctors as we continue in this journey. 

We simply ask for prayers.  We believe in the incredible power of prayer! 

Thank you so much for your love, support, prayers and well wishes.  We are very appreciative!  We will keep you updated and let you know how surgery goes.

Thank you!

Tom, Debbie, Mitchell, Lexie & Ellie