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Ellie's Journey Continues...

February 27, 11pm: What a long day for an almost 3-year-old!  We went to Omaha for oIMG_3893.jpgur chemo appointment.  Here is Ellie getting her blood pressure taken when we arrived.  All of her vitals looked great.  She also gained more weight! 

They wanted to do the CT scan first.  Ellie had to drink a liquid to show contrast on her scan.  They gave her 90 minutes to drink it and make sure it was in her system.  Then she had her CT scan.  She laid perfectly still and they didn't have to sedate her at all.  Thankfully! 

Here she is on the way to her scan.  She had to wear a mask being out in the hospital IMG_3905.jpgbecause they are having so many cases of influenza. After her scan, they wanted to flush out her system before they administered the chemo drugs.  They didn't want too many different chemicals in her body at once.  So, they hooked her up to an IV and gave her fluids over the course of an hour.  Ellie was very wiped out by this point and fell asleep on me while receiving her fluids through the IV.  When they felt she was ready, they gave her two different chemo drugs. 

After our chemo appointment, we went to another hospital for her radiation appointment.  This was her one-month check-up after completing radiation.  At this appointment, they showed us Ellie's CT scan results.  They felt everything looked great.  There was nothing new or suspicious.  No nodules or new growths.  We were very excited!  They really feel like she is on the right course to recovery and remission.   

We finally arrived home 8 hours after we left.  Ellie was very tired, but in good spirits.  We haven't seen any bad side effects from any of the drugs she received today.  

As I put her to bed tonight, she prayed, "Dear Jesus, please make me better.  I don't like ouchies or pokes.  I love you Jesus." (she calls it a "poke" when they stick her with a needle).

As we wind down this day, we are grateful for so much.  For medical technology.  For doctors and nurses who care.  For our circle of supporters.  For each other.  For the chance to fight for Ellie.  Most of all, we are thankful that God is with us.  Even though the Earth is covered with billions and billions of people, God knows Ellie personally.  He created her and knows everything about her.  He will not forget her.  Of course, the same can be said of YOU.  He loves you and won't forget you either.  And we won't forget the incredible support you have all given us over the course of this journey.  Thank you.

"I will not forget you.  I have inscribed you on the palms of my hands." Isaiah 49:15-16 

 

February 26, 8am: Ellie is doing great!  She is in wonderful spirits and playing non-stop.  IMG_3888.jpgHere she is after her bath last night.  Her appetite has improved greatly and she seems much stronger.

Our challenge right now is not Ellie, but her older brother and sister.  They are on Day 2 of being home from school with the flu.  So I need to take care of them without letting Ellie get sick.  The doctors have told us that Ellie cannot even get a sniffle.  If her temperature gets to 100, they will admit her to the hospital.  My whole goal is to keep her healthy (or "healfy" as she says) while nursing my other kids back to good health.

Ellie has a big day tomorrow.  We go in for chemo and she will get two chemo drugs.  She also will get a CAT scan.  They want to do a check to see that radiation and chemo have been working.  We also have an appointment tomorrow with the radiologists.  It is her one-month check-up after radiation was completed.  I am excited and nervous to get all of her tests done.  I am so very hopeful that everything is working well and that she doesn't have any spots of cancer or anything suspicious in her little body.

We will be strong and believe only the best.  We will believe that everything looks great!  Thanks for helping us be strong.  I will keep in mind one of my favorite verses: "I can do everything through Him who gives me strength."  Philippians 4:13 


February 23, 9am:  Thank you to my friend Vicki for passing on this verse to me: "As Jesus passed by, he saw a man who had been blind from birth.  And his disciples asked him, 'Master, who sinned, this man, or his parents, so that he was born blind?'  Jesus answered, 'Neither this man sinned, nor this parents; but this happened so that the works of God should be revealed in him.'" John 9:1-3  This verse was very comforting to me because I have wondered many times about what I did or didn't do during pregnancy to allow Ellie to have cancer.  Or perhaps I exposed her to something or somehow caused this.  The doctors have told us that it was nothing we did and that there was no way to prevent this.  But hearing this verse in the Bible has given me more comfort than even the doctor's words.  And I love the last line, "but this happened so that the works of God should be revealed in him."  I am very humbled to think that the works of God could be revealed in Ellie.  Even in a small way. I know God can work through even the smallest of His children to teach us lessons.  I pray that her journey will give others hope.  Or maybe inspire someone to face a challenge with determination.  Any small good that comes out of this will be wonderful.  Of course, it is not because of Ellie or me typing these words.  This is all truly the work of God.  He has planned out this journey.  He already knows how it's going to end.  I pray that we are obedient enough that He can work through us for the good of His kingdom.  We simply need to listen to Him and believe in Him.  And, thank you to YOU for your continued prayers.  We are uplifted and blessed by you.  Thank you.  Have a wonderful weekend and I'll update soon.

 

February 20, 10pm: Chemo went very smoothly today.  All of Ellie's vitals and blood work looked greIMG_3827.jpgat.  She received her one chemo drug today with no side effects.  It was an easy day!  Here are Ellie and I waiting for her test results to come back before they could start chemo.

Ellie also gained some weight!  Only 2/10th of a pound, but we were excited.  We are at least heading in the right direction.

When we got home, Ellie started playing with her dolls and announced that she was a doctor.  She told one of her dolls, "You have a port and I need to put embla on it and then the butterfly won't hurt."  (Translation: the port is where they put chemo in, the embla is the cream they use to numb the port, and the butterfly is a needle with "wings" on it they use to administer chemo.)  I cannot believe my 2-year-old has these words in her vocabulary.  As I listened to her, I didn't know if I should laugh or cry!  I am sad she has had to come to know these words, but on the other hand, she just deals with all of the medical procedures matter-of-factly.  It's simply part of her life right now.  She is learning to deal with a lot at a young age.  I know it is all part of something bigger that will make her stronger in life.  There are many lessons to be learned on this journey!

IMG_3833.jpgHere is Ellie when we got home tonight eating a celebratory cupcake that my friend Katie brought over.  She thoroughly enjoyed it!

Our thanks for all of the prayers today.  So many of you have told me you pray for us specifically on Wednesdays when we have chemo.  We can feel it!  We are so grateful to be surrounded by such a strong circle of Christian friends.  Thank you.

"Let us run with perseverance the race that is set before us." Hebrews 12:1 

 

February 19, 7pm: Just a quick update: Ellie is still feeling great.  She's been playing and running around a lot.  In fact, naps have become an interruption for her.  She told me today, "I'm almost 3 so I don't take naps anymore."  We are so thankful that she feels that good!

We head to chemo tomorrow and Ellie only gets 1 drug.  I am not anticipating any problems.  Of course, I didn't anticipate any problems last week and she ended up getting a blood transfusion.  But I am really not expecting anything out of the ordinary tomorrow.

We will update when we get home!  Blessings to you.

"I have called you by name, you are mine."  Isaiah 43:1 

 

February 17, 4:30pm: We are having a great weekend.  Ellie is feeling fantastic and is in a great mood.  We are having funIMG_3805.jpg with her.  I think her blood transfusion really helped give her a boost.  Even her color looks better.

As you can see from the picture, she still has hair.  We are on week 3 of losing hair.  I know it's hard to see by the photo, but she probably has about 1/4 of it left.  She has many bald spots and her scalp is really showing through her thin veil of hair.  Out of the blue yesterday, she started laughing and said to me, "Mommy, isn't it going to be funny when I'm bald?"  Losing her hair doesn't bother her a bit.  I love her attitude!

At our appointment on Wednesday, Ellie weighed the same.  She still hasn't gained any weight.  She simply doesn't have that much of an appetite.  So, I took her to the grocery store and let her walk up and down the aisles.  I let her pick out whatever looked good to her.  She was throwing things in the cart right and left.  Since she was picking the food, we ended up with things like Princess gummies, Mickey Mouse cereal, and Dora soup (who knew there was such a thing?!)...  I am determined that we will have a weight gain this week!

Thanks for all of your comments and prayers.  We have never felt alone or forgotten in this journey.  Not from all of you or from God.  It has been truly uplifting.  And thanks to all of you who are wearing Ellie's bracelets.  When I run into someone and I see that pink bracelet peaking out from under a sleeve, it warms my heart.  We are so blessed that you are praying for our girl.  Thank you.

"I will never leave you or forsake you." Hebrews 13:5 

 

February 14, 1:00pm:  Our "easy" chemo treatment yesterday turned out to not be so easy.  We arriveIMG_3798.jpgd and they took IMG_3802.jpgblood, which they always do.  When they got the results of her blood work back, they decided that Ellie's hemoglobin count was too low.  They wanted to give her a blood transfusion.  So they ordered the blood from the blood bank.  Ellie played while we waited and we ended up waiting 2 hours for the blood to arrive, so we did a lot of playing!

 

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When the blood was delivered, they hooked Ellie up to an IV and began the drip.  It took 2 hours to do the transfusion.  Here is Ellie during the transfusion making an art project.  The tube to the left of her is part of the IV. 

Praise the Lord for the medical technology that they can even figure out when blood counts are low and then have a way of fixing the problem.  After the transfusion, Ellie slept the whole way home and woke up feeling completely refreshed.  The new blood must have been the boost she needed because she woke up singing and dancing!

Our quick appointment ended up being over 6 hours, but I am so grateful that she is feeling good.  Today she is bouncing all over and talking a mile a minute. 

Let me share a wonderful note and piece of artwork we received when we got home last night.  My friend Susan sent us a picture that had butterflies all over it.  The butterflies were beautifully colored by a child.  The note Susan sent said, "Messiah school children put their handwriting papers in members' mailboxes.  This one was in our mailbox on Sunday.  I think it was meant for you.  The verse is perfect and the butterflies are such a beautiful reminder of hope... of that ugly cancer to be gone and Ellie to emerge more beautiful and more healthy than ever." The verse, written in perfect student penmanship, says, "So it is with prayer - keep on asking and you will keep on getting; keep on looking and you will keep on finding; knock and the door will be opened. Luke 11:9".  Thank you to Susan for passing it on to us and to the Messiah student who made our wonderful artwork.

I am constantly reminded of how grateful we should be for the challenge we are facing.  There are so many facing much more than us.  Yesterday we met Emily who is 5.  She was diagnosed with Leukemia when she was 2.  She is on her 3rd year of chemo.  I feel so deeply for these kids.  I don't cry for my own child during our treatments, but I look around and begin to cry for other children.  We are so blessed to only have 6 months of chemo.  We are blessed that Ellie's tumor was a solid mass and they were able to get it all out.  We are blessed that Ellie feels good and is handling everything so well.   Truly, we have more blessings than challenges.

We are very, very thankful.  "Give thanks to the Lord, for He is good; His love endures forever." 1 Chronicles 16:34 

 

February 12, 7pm: Ellie is having a great day!  She is feeling wonderful and playing and laughing a lot.  I love it!   We head toIMG_3795.jpg chemo tomorrow and it should be a very easy day.  She gets only 1 drug and it is the one that gives her the least side effects.  She and I are looking forward to a fun day in Omaha.

I have to tell you what has been in my mind so strongly over the last few days.  I am amazed by the children that Ellie's situation has touched.  I am so grateful for that.  It's not often that children have a chance to know another child who has a serious illness.  I love the stories I hear about the kids praying for Ellie.  What an incredible opportunity for kids to learn compassion and caring for one of their own.  I love the ripple effect that her situation is having.  I have always believed that Ellie was going through all of this for a reason.  Here is just one, beautiful reason. So many people have told me their children are praying specifically for Ellie.  What a humbling thought it is to me to think of these innocent, faith-filled children talking to God on Ellie's behalf.

I told Ellie that we are going to have to go on the Ellie Recovery Road Trip in a few months and we are going to visit all of these amazing kids and thank them in person.  A few of the stops (there will be many stops - we have so many to thank!) will be: a trip to Kansas City to visit Alex who went to school to sell Ellie's bracelets.  He raised $52 (a lot of it in quarters) at his elementary school!  Most kids gave him their lunch money.  Isn't that amazing?!  Ellie and I will treat you to pizza when we come!  We will also head to Faith Lutheran Elementary school, where the kindergarten class made that amazing blanket and hat for Ellie, and, just today, we received a batch of Valentines from the 4th grade class.  The 2nd grade class of Christ Schools also sent Valentines today.  Reading these homemade cards with their innocent, sincere sentiments is priceless.  They are so heartfelt!  We will also head to Fullerton, NE, where the "Christ Kids" group of 4-6th graders has been following the website updates (the teacher brings her laptop so they can stay updated!).  At the end of class, each child has the opportunity to pray for whomever they want to before they say the Lord's Prayer.  The teacher said that each week, everyone says a special prayer for Ellie! 

Ellie has also received many beautiful pieces of artwork made lovingly by children.  And kids stop Ellie at church or at the store to tell her they are praying for her.  I love that!  It has been an incredible blessing to see how this has touched children.  I pray that it has a positive impact on them.  I know they are having a positive impact on us.

We will update when we get home from chemo tomorrow.  Thanks for your continued support and prayers.  We are blessed!!

"Jesus said, 'Let the little children come to me, and do not hinder them, for the kingdom of heaven belongs to such as these.'" Matthew 19:14
 

February 10, 6pm: Hello from Tom.  I am updating today instead of Debbie. I wanted to thank everyone for their prayers and support.  We are strengthened and encouraged by your comments, cards, e-mails, calls, and texts. 

IMG_3778.jpg This whole process could not have been orchestrated by any individual or group.  We know that God has been involved since the beginning and that only He could bring us all together.  We know that God has a plan for Ellie and we trust in Him. 

Ellie is feeling good today.  Here is a picture of her taken this morning when we got home from church.  She continues to lose her hair, but she is in good spirits.

I need to thank several people at Monsanto for helping with my work-related activities over the last several weeks: Matt Kirkpatrick, Jeff Frerichs, Justin Mason, Gene Sedivy, Mark Thornburg, Julie Farren, and Andy Harken.  I also want to thank my dealers and customers for their support and patience during this time.  They have allowed me to focus on my family's needs without worrying about work.  We've also received several cards and gifts from different groups in Monsanto and we really appreciate the encouragement.

 As we reflect on all of the people who have been praying for Ellie and our family, it brings to mind the following verse from Romans 8:28: "And we know that in all things God works for the good of those who love Him, who have been called according to His purpose."

 

February 8th, 2pm: Just a quick update!  Ellie is doing really good today.  IMG_3763.jpgWe did have a bit of a rough day yesterday.  She had been given the new chemo drug on Wednesday and we saw some side effects from that yesterday.  She threw up several times and was very lethargic.  But today she is doing much better.  We are looking forward to a weekend of getting caught up on sleep and getting some strength back!  Here is a picture of Ellie today.

I wish you all a wonderful weekend!  As always, thanks so much for blessing us with your comments! 

"The blessing of the Lord be upon you." Psalm 129:8 

 

February 6th, 7pm: What a long day!  Chemo today was much different having added the new drug to our routine.  Up until today, Ellie would get her chemo drugs by injection into her port.  Today, they gave her the new drug by IV drip and that made for a much longer visit.  I am so grateful that she will only receive this drug 4 times.

IMG_3753.jpgIMG_3754.jpgWhen we arrived, Ellie was in great spirits.  Here she is getting her weight and height taken.  We were hoping for a weight gain, but she was the same.

They drew some blood to do some tests and we needed to wait to get the results of those before we could procede to administering the chemo drugs.

IMG_3762.jpgHer blood results came back and everything looked really good.  So they finally began the drugs.  She was given one chemo drug by injection and then the IV was started for the next drug.  Ellie got very lethargic during the drip and basically just laid on Tom.  She seemed to be a bit out of it.  After the drug was in her system, they gave her some fluids through the IV and then she began to perk up.  After some snacks and juice, she seemed much better.  Since we left, Ellie has been great.  They told us that the side effects of this new drug may show up in the next several days, so we'll just watch her.  We were also told that this drug will speed up hair loss "exponentially".   All in all, we thought she handled everything really well. 

Once again, I am so amazed by the outpouring from all of you!  I received phone calls, texts, and e-mails while we were at the hospital today.  You are all so incredible.  One that really hit my was an e-mail from my friend Vicki, who said, "You are reaching so many people with your strong faith and the devil does not like it, he will work at you.  Stay strong in God, just like you have been.  Your friends and all that are praying will provide you with a prayer shield you need to keep you safe from evils unknown, so that God may continue to work through you."  Thank you so much, Vicki! 

And thank you to all of you who pray for us.  We appreciate your prayers, thoughts, kind words, notes,... more than you'll ever know. You give us strength! 

I'll share with you Ellie's prayer last night, "Dear Jesus, please get me healfy, and, don't forget: I love you, Jesus!" 

"So do not fear, for I am with you; do not be dismayed for I am your God.  I will strengthen you and help you; I will uphold you with my righteous right hand." Isaish 41:10

 

February 5th, 2pm: I wanted to share a photo with you of Ellie today.  She is really holding onto her hair much longer than I IMG_3747.jpgthought she would.  As you can see, her hair is very thin, but she still has quite a bit of it. They had told us that she would be completely bald within 6 weeks of surgery.  We are in week 5 right now, so we'll see if she holds onto it through next week.

We are heading to chemo again tomorrow and I find myself being anxious about it.  When we started talking about chemo after surgery, they told us we would start the "bad" chemo drug on week 4 of chemo.  Well, week 4 of chemo is tomorrow.  She has been on 2 chemo drugs so far.  She will add this 3rd one tomorrow and will receive it only 4 times during the 6 months of chemo.  This drug has many more side effects, including that it can cause heart damage.  I don't know why I am feeling nervous about it.  I know that Ellie has handled everything so well so far.  I have no reason to fear that she won't handle this well too.  Thanks to my friend Julie for reminding me that everything will be ok and that I shouldn't be scared.

I have often heard that F-E-A-R stands for False Evidence Appearing Real.  Fear is a tool the devil uses.  The devil presents false evidence and makes it seem real.  I can listen to him or I can believe God.   I know that prayer is my greatest weapon against fear.  I need to believe the best will happen. I need to speak, think and profess only words of hope, encouragement, health, belief... those are God's truths for us.  Not words of hopelessness, doubt or negativity. 

So, as we head to chemo tomorrow, I believe that only the best will happen.  I will look forward to Ellie being one week closer to recovery!

"The Lord is my light and my salvation - whom shall I fear?" Psalm 27:1

"The Lord is with me; I will not be afraid." Psalm 118:6 

 

February 3rd, 3pm: A Christian writer, Susan Darst Williams, had found her way to our little website and contacted me about writing an article about Ellie.  She wrote a beautiful article and posted it today on her website.  You can read it at: www.dailysusan.com.  Susan said she wanted to write and post an article to help widen the circle of people praying for Ellie. We are very grateful.  Thank you Susan!

 

February 1st, 7pm:  On the first of this new month, I cannot help but reflect on all that has happened in the last 30 days!  What a difference a month can make!  A month ago, Ellie had been diagnosed, but had not had surgery yet.  Since then, we have had surgery (to remove a tumor and her right kidney), she has had radiation, she has begun chemo.  That's the "technical" stuff that has happened. 

But what has truly happened is much bigger and better than that.  We have grown so much.  We have come to rely on our faith.  It has not only sustained us, but we have become much more faith-filled.  Our relationship with God has grown by leaps and bounds as we have trusted Him to get us through this journey.  We know He holds Ellie in His loving hands and we trust in all that He does. 

We have also become closer as a family.  The time together has been wonderful.  As we rally around this little girl, our perspective has changed so much.  We don't find ourselves too busy to stop and have a game of Elmo Uno.  We don't hear ourselves say, "Later" when Ellie asks to be read to.  It is so true that you just don't know what the bend in the road may bring.  Your life can change in an instant.  Right now, hug those around you.  Spend time together. (ok, I'm a little emotional right now - bear with me!)

Another blessing of this last month is the amazing outpouring from friends, family and strangers (or "new friends").  Our relationships with those we knew before have deepened.  We have come to see such amazing qualities in our friends.  And it is a true blessing to get to know those around us on a deeper level.  Instread of running by people at church, school, grocery store... with the usual quick "Hello!", we now talk about faith, healing and what a little girl's determination has taught us.  What a lesson that is!  Why weren't we getting to know each other like that before?  Why does it take something like this to make us appreciate those around us?

The outpouring of our "new friends" is what truly has been amazing to me.  I am embarrassed to say that I didn't reach out to strangers as much as I should have before this.  Tom and I are now forever changed and look to see where we can help - whether we know someone or not.  Let me give you just a few examples of what strangers have done for us:

* A beautiful "Cuddle Blanket" was made by a grandma who makes them for her grandkids and, although we don't know her, she wanted Ellie to have one too.

* Prayer Shawls have been made by the ladies at First Presbyterian Church and at Grace Lutheran Church and sent to us.  We don't attend either church.  They just made them out of love for a girl they don't know.

* A Christian writer is doing an story on Ellie on her website (more info about that this weekend!).

* A young woman we haven't met yet is running in a benefit cancer run and asked if she could run in Ellie's honor.

* The 7th grade class at Blessed Sacrament School sent cards and notes they had made.  Their teacher enclosed a note that said, "When we read about what Ellie is going through on the website, it helps my 7th graders, who are usually concentrated on themselves, reach out to Ellie and your family in prayer."  The notes these kids wrote Ellie are beautiful!

* A package arrived with two beautiful hand-crocheted hats.  It was anonymous and was simply from two moms and their daughters to Ellie.

* The coffee shop at First Lutheran Church in Brookings, SD, is selling Ellie's bracelets.  

There are many more examples of such kind gestures.  And, most importantly, we have so many people we haven't met who are praying for Ellie.  That warms our heart.  Each day we are amazed and overwhelmed by how good and loving people are.   What a blessing that lesson has been for us.  Thank you!

DSC00090.JPGIMG_3737.jpgI'll leave you with two pictures of Ellie.  One was taken a month ago and one was taken today.  As you can see, she is now much thinner and her hair is too!  But, you can also see that she still has her spirit.  She still has her determination (even more so!) and her spunk.  She has taught me much. 

 

It is amazing how God has worked to bring good out of the evil that is cancer.  This journey has truly held more blessings than not. 

Thanks to my friend Darla for pointing out this Bible verse: "And we know that in all things God works for those who love him, who have been called according to His purpose." Romans 8:28 

 

January 30th, 5pm:  We went to chemo today and Ellie was a true trooper.  This was our 3rd chemo treatment and she is starting to get used to the routine.  She knows she will get a sticker if she lets them weigh her and take blood pressure.  So
IMG_3731.jpgshe goes along with it - all the while eyeing the stickers hanging on the wall.  Then we have a chance to play in the playroom while we wait.  Today my mom came with me as Tom was out-of-town.  Ellie was excited to show Grandma Kate all of the  toys she likes to play with.  Here she is being "Dr. Ellie" and listening to Grandma's heartbeat. 

Ellie and I also got a chance to play.  IMG_3728.jpg

 IMG_3732.jpg

 

 

 

Then it was time for the actual chemo treatment.  Grandma even went into the room with us, but it was a bit hard for her to watch.  No one wants to see their grandchild go through that.  Ellie REALLY doesn't like chemo treatments.  It doesn't hurt her, but it scares her.  Ellie has a port which is a round plastic piece that they implanted into Ellie right under the skin. It has a long tube attached to it that is inside her body.  When she goes into chemo, they stick the needle into her port.  We numb her port so she can't feel anything, but just seeing the needle and watching many different fluids be pumped into her body scares her.  Rightfully so!  The doctors and nurses are very efficient and it doesn't take them long to administer her drugs.  There are always a few extra nurses in the room to read books, blow bubbles and basically try to distract Ellie.  But it never works.  For some reason, she likes to watch what the doctors are doing.

We also saw our surgeon today.  He is the one who took out her tumor and kidney.  He was very pleased with the way her wounds are healing.  He thought they looked great - especially for beginning radiation and chemo so soon after surgery.  

IMG_3727.jpgHere is a picture of Ellie when we first arrived at the hospital today.  I share this with you so you can see how her hair is thinning out.  She still has a lot of hair, but it is getting quite thin in spots.  We bought a big lint roller today to keep Ellie and her things as hair-free as possible.   She is constantly covered in hair!

Today I saw a mom at the hospital who looked like she was in shock walking into the chemo department.  It's hard to believe that that was me just 3 weeks ago.  It's amazing how quickly you adapt and just accept that this is your life for right now.  I meet a dad who has been at this chemo thing longer than I have and he said it simply becomes part of your life and you just make the best of it.  I don't cry anymore walking in there.  In fact, today, Ellie and I ran to the play kitchen.  It's just part of our routine and you try to have fun and make it an adventure.

We are so thankful for the doctors, nurses and everyone who works so hard to make Ellie better.  They are amazing.  We are also thankful for this incredible support system that God has surround us with.  We are blessed beyond our belief!  Our circle includes each of you and we so appreciate your support, compassion, and love.  The prayers are felt!  I thank you for "storming heaven" with your prayers on Ellie's behalf.  What a blessed little girl!!   We have such hope for her and her future.  We truly believe she will come out of this journey better than ever!  She will have a new strength, determination, and compassion that she would not have otherwise had.  Everything is a blessing!  And we are thankful for everything sent our way.  "Let the peace of Christ rule in your hearts, since as members of one body you were called to peace.  And be thankful." Colossians 3:15
  

January, 29, 8am: Hair loss begins. 

I was reading a book to Ellie on Sunday and she had her head leaning back on my chest as she sat in my lap.  When she got up, my shirt was covered in clumps of hair.  It was a bit shocking for me.  I know she is going to lose her hair.  I know that is coming, but it was just so "real".  Seeing that hair made me realize this is really going to happen.  It's such a visual sign of this process.  Up until know, you would not know that she was sick.  She looks good, she's in great spirits.  But now, it will be an obvious sign to all who see her that this little girl is sick.  I had a talk with Ellie and told her that her hair is going to fall out.  I had tears in my eyes as I explained it to her.  She simply said, "Oh Mommy!  It's ok!" and she gave me a big hug.  She is handling this all so much better than we are!  Since Sunday, her hair is falling out slowly, but constantly.  She is forever covered in hair.  It's in her Play-Doh.  It's in her food.  It's all over her bed, her clothes, her toys...  She is very annoyed by it and it constantly picking it out of things.  I almost wish it would just all fall out quickly!  I know the fact that her hair is falling out means that the chemo is working.  It's a good thing.  In addition to attacking her hair, it is attacking the bad cells in her body and that is what we want.  So I will happily follow Ellie around, picking up hair, knowing that this is a step in the right direction in her process of recovery.

On a personal note, please indulge me this morning in sending out a special thank you.  I have to publicly thank my clients and consultants.  My Mary Kay clients have been so loyal to me and insistent that my business survive this crisis.  Thank you!  My unit has been amazing and has rallied - despite having a director who cannot be very hands-on right now.  You're the best!  A special thank you to my fellow directors who have stepped in to work with my consultants.  Incredible!  Mary Kay, Inc., has made sure I know that my focus right now needs to be my family and that my career will be waiting for me when I'm ready.  If I had a "real" job, I would have had to quit by now.  A heart-felt thank you!!  I am so blessed to be surrounded by such powerful, faith-filled women and a caring, loving company.  

Another thank you to all of you who have ordered the "Ellie Grace Prayer Circle" bracelet.  The initial 500 bracelets that our friends had ordered has already sold out.  Tom's fraternity brothers from FarmHouse stepped in and ordered 1000 more to replenish the inventory!  Thank you!  We are excited to have this visual reminder to pray for Ellie and others.  We are also thrilled that we will be able to help the children and cancer charities that are doing so much to help kids like Ellie.

Thanks for your comments, thoughts, and prayers.  We are so blessed by you.  We thank you for supporting us during diagnosis, surgery, radiation and now, chemo.  As we face this next phase of treatment, we are very hopeful.    

As we head to chemo tomorrow, we'll remember: "Be strong and take heart, all you who hope in the Lord."  Psalm 31:24 

 

Posted on Tuesday, January 29, 2008 at 09:04AM by Registered Commenter[Your Name Here] | Comments126 Comments | References16 References

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Reader Comments (126)

dear deb and tom, first of all, i wanted to say, little ellie is BEAUTIFUL!!! i havent had to opportunity to meet her in person, but she's looks like a fighter to me!!! GOD BLESS YOUR ENTIRE FAMILY, and your extended family also feels your pain, and your hopes!!! it's such a trying time but I believe that she will come through with flying colors and be such a strong, independent young woman from this that nothing in her adult life will ever bring her down!! stay strong!!God does things for a reason, sometimes we don't know why, and ask, why not me, but something good will come out of this... thoughts ands prayers....love ya missy

Debbie and Tom --

You are amazing witnesses to God each and every day!! You are glorifying Him in your words, your prayers, your humility and your courage. Our prayers for you and Ellie continue every day. Her bright smile is so inspiring to us! I trust in Him to wrap His protecive arms around you all and heal Ellie.

Continue in Faith. Each day brings you another day closer to healing.

In Christ's Love, Suzie Feist and Family

February 7, 2008 | Unregistered CommenterSuzie Feist

Hi Ellie and family-

We just read up on the latest happenings on your website. It was so nice to see your beautiful smile. We certainly look forward to when we can see your happy face at Patty's again. We are all praying for you, your family and your doctors each and every day. Your family's faith and strength are an inspiration to all who are living through this journey with you. Thank you so much for letting us be a part of the difficult and joyous times you are having. We love and care for you all.

God bless you,


Connor, Emma, Marci and Scott Davis

February 8, 2008 | Unregistered CommenterThe Davis Family

Hi Volk Family!

It was good to see you at church on Sunday. I continue to be blessed Ellie's story and the strong faith and family you all share. Lydia is so taken by Ellie and her beautiful smile and positive attitude. I am glad that my nine-year-old daughter has such a wonderful example in your little two-year-old! She's an example to me as well, as are you!

I am glad to know of the progress Ellie is making and continue to pray that God will extend His almighty, healing hand through the doctors, nurses, and medicines associated with her treatment. My prayers include Ellie's dear parents as well - I can hardly stand it when my daughter, Lydia, is not feeling well or when someone has hurt her feelings - I can only imagine how tough it must be to watch such a tiny little one fight such a huge adversary. But, PRAISE GOD she is shielded by her hero, JESUS CHRIST, and covered by the prayers of so many of His warriors. Hold strong, Tom and Debbie, because He has also wrapped you in His love and will sheild you from all fear and doubt.

And now, a special word for Mitchell and Lexie. As you stood with your Mom and sister at church on Sunday I was moved to pray for you, specifically, as I entered church for worship. You have been on my heart all week. What an enormous burden you carry each day as you hold your dear little sister in your heart while trying to continue with all the "stuff" of the life of any young person. I am in awe of your strength of spirit. Know that Lydia and I pray for you two, by name, each and every time we pray for Ellie. Lydia said to me one day that she would be so sad if her baby sister had cancer and had to do all "that stuff." She also said if Ellie were her little sister, she'd wish that she had the cancer herself rather than see Ellie with it. I am sure you have both thought the same thing throughout this ordeal. You are Ellie's heroes. She loves you and needs you. I praise God that she has you and that your parents have you, too. You are the anchor to life, as your family knew it, before the cancer. You have an important part in God's plan and you are making an award-winning performance in that role! Thank you for the example you are setting for all of us, too.

Your sister in Christ,

Laura Asplin

February 8, 2008 | Unregistered CommenterLaura.Asplin

Hi Volk's. You have been in our daily thoughts and prayers. I have so many friends praying for all of you and here is an email I received from my dear friend Cathy Keller (Albracht). I don't know how many other families you've encoountered throughout this journey, but here is one that you may want to get in touch with. "Hi, Cori, if you want you can forward this info to the Volk's. It's from Lori Hueftle, from Omaha, a friend of mine whose 8 year old daughter (actually she turns 9 tomorrow) has Wilm's and is being treated at Children's. Rachael has been treated for 8 months and just had her last chemo treatment, hoping for remission. Rachael's care page is support@carepages.com under Rachael Hueftle. You can tell the Volk's that you and I went to high school together and that I remember Tom from that time frame. Also I'm Mike Wojtalewicz's sister-in-law. He and Tom worked at Asgrow together."
Thanks, Cat

Keep the faith, Cori, Rick & boys

February 8, 2008 | Unregistered CommenterRick & Cori Fullnerfamily

Hi, Cori, if you want you can forward this info to the Volk's. It's from Lori Hueftle, from Omaha, a friend of mine whose 8 year old daughter (actually she turns 9 tomorrow) has Wilm's and is being treated at Children's. Rachael has been treated for 8 months and just had her last chemo treatment, hoping for remission. Rachael's care page is support@carepages.com under Rachael Hueftle. You can tell the Volk's that you and I went to high school together and that I remember Tom from that time frame. Also I'm Mike Wojtalewicz's sister-in-law. He and Tom worked at Asgrow together.
Thanks,
Cat

February 8, 2008 | Unregistered CommenterRick & Cori Fullner family

Ellie and family..many continued prayers to you and your family. Karissa and I are goin' to Texas, but we'll continue the prayers. After all God hears our prayers no matter where we are. Glad to hear Ellie is still in high spirits. The strength lil' ones have is absolutely amazing!! Continued prayers and blessings!! Your friends in Oklahoma!!

February 8, 2008 | Unregistered CommenterAmandaNicole

Just letting you all know that you're always in my thoughts and prayers.....I want to 'ditto' everything that has been written!!! You,Tom and the children are such an inspiration!!

God's blessings, healing and peace to you and your family knowing He has your back!

Miss you!!

February 8, 2008 | Unregistered CommenterLauri Behrens

Thanks so MUCH for the daily updates -- it is great to see Ellie continuing to SHINE!
And remember, hair is way over-rated!!!

February 8, 2008 | Unregistered CommenterAmy Killham

Hey Ellie:
Connor, Norah and Jake are looking at your pictures with me. They said you look pretty. Norah said "I wish she would come back". We miss you!!!! Have a great weekend.
Love you alot!!!
Patty, Norah, Connor and Jake

February 8, 2008 | Unregistered CommenterPatty Hill

Hi,
Just want to know my heart goes out to you and your family. It is so hard to have a little one so sick. But we in Battle Creek is praying for a complete recovery for Ellie Grace. My prayer is with you as parents as well. Gods Grace to you.

February 8, 2008 | Unregistered CommenterCarolyn Prauner

Dear Ellie and Family - My sister and parents attend your church. My sister forwarded me your website. I was very moved by your bravery and the love you have in your family.
You are a beautiful little angel!! Just remember that God has his arms wrapped around you, your family and is holding on tight. He loves you very much!!
I have sent your website onto other prayer warriors at our church which is Monte Vista Presbyterian in Newbury Park, California. We have you and your family in our thoughts and prayers!

Stay strong!!

February 9, 2008 | Unregistered CommenterJanis Medler

Oh! Ellie! I am so proud of you for donating your golden pony tail to Locks of Love! Now, I envision two very happy kids wearing our gifts! Many blessings to all. Cousin VeraMae

February 9, 2008 | Unregistered CommenterCousin Vera Mae

Ellie,
I think about you and pray for you every day. You inspire me to instill hope and faith in my patients.
You are so strong and so brave. Jesus loves you.

February 10, 2008 | Unregistered CommenterKim Williams

Ellie, Tom, Deb, Mitchell, Lexie: We take you each day to our Heavenly Father, asking for Ellie's healing, as well as His mercy and strength to be with each of you. We can only imagine, somewhat, the challenges faced each day for your family. Thankfully, God knows them before they even appear, and has already addressed them.
In His Love
Rod & Shar

February 10, 2008 | Unregistered CommenterRod & Shar

I saw something at a ballgame Friday night that instantly made me think of Ellie. Sitting just a few seats from me was an entire family that had shirts on the simply read GRACE! So I thought of Ellie. Then when they turned around it read:
God
Rising
Above
Cancer
Everyday!

I just wanted to share it with you.

God Bless!
The Barrys

February 10, 2008 | Unregistered CommenterBecky Barry

We just wanted you to know that you are all in our prayers. My daughter is a classmate and friend of Lexi's and we have been monitoring Ellie's progress on your site ever since you started it. We were so excited to see you all in church this last weekend - Ellie looked so cute being taken up to visit with Pastor with her big sister holding her hand.

As hard as it is, remain strong. You have so many people thinking and praying for you.

Holly, Roger and Hannah Oberle

February 11, 2008 | Unregistered CommenterOberle's

This story was just e-mailed to me. Just wanted to make contact with you. i know what you are going through, i have a grown daughter who had bilateral wilms the same size as ellie's. this was in 1983,1984 at UNMC in Omaha. would love to make contact with you along with my prayers. Kyla is 26 and the mother of two. this was when she was 18 months old.Bpierce@nctc.net

February 11, 2008 | Unregistered CommenterBruce Pierce

I am the 2nd grade teacher at Christ Schools, and I just wanted you to know Ellie that we pray to Jesus for your healing everyday. We know that He is beside you holding your hand through this entire ordeal. My dad has cancer too. He found out that he had colon cancer in December and had to have surgery and is doing chemo too. In fact, the day you started your radiation was the day my dad started his chemo. Our lives have changed so much in such as short amount of time, but I know that God has a plan for my dad and for you. I have a Bible verse for you.

O LORD my God, I called you for help, and you healed me. -Psalm 30:2

Keep praying to God Ellie. He will hear your prayers...and ours for you.

God bless you always! Keep Smiling!
Mrs. Douglass

February 11, 2008 | Unregistered CommenterDoni Douglass

I have been doing the Relay For Life in Platte County Nebraska for 6 years now. My mom was diagnosed in 2000 and I have become a BIG supporter to help raise money for research, advocacy, and all that comes with that. Anything I can do to help, PLEASE let me know. I would be interested in helping sell "Ellie Grace Prayer Circle" bracelets. Just let me know what I have to do. Little kids should not have to deal with this. They didn't do anything wrong to deserve it. Thoughts and Prayers are with you and your family, ESPECIALLY ELLIE.

February 12, 2008 | Unregistered CommenterChristi

Volks, this site is amazing! The Lord's work is being done throughout the country because of Ellie -- "and a little child shall lead them!"

Praying for all of you every day -- God is the great physician and He can heal her. "Those who hope in the LORD shall renew their strength. They shall rise up on wings like eagles; they shall run and not be weary, they shall walk and not faint." God is raising all of you up on eagles' wings as you run this race "and not be weary". May He continue to pour out his blessings on you!

February 12, 2008 | Unregistered CommenterMary & Jerry Fischer

Dear Ellie I know that everyone is praying for you!

February 12, 2008 | Unregistered CommenterKatrina Staab

Hey Tom and Family,
We have some good friends in Plainview that saw this and thought I might know you because of the Monsanto connection. Mary and I will be praying for Ellie and your family.
Here is one of my favorite verses: Luke 14: 11 "For everyone who exalts himself will be humbled, and he who humbles himself will be exalted". Everytime God humbles me - (and He does quite often) - I know He has some reason for doing it.

In His Name

Dan and Mary Speas

February 12, 2008 | Unregistered CommenterDan and Mary Speas

I hope that you will have a safe trip to Omaha and back to Lincoln in one piece. And that chemo will go fine tomorrow for Ellie.

You are in my thoughts always.

Rita Offutt

February 12, 2008 | Unregistered CommenterRita Offutt

Dear Ellie,

I am so happy to read that you are doing well! I wear my bracelet everyday and continue to keep you in my prayers!

Keep up the fight!
Tracy Skoog

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