Ellie Grace Volk

November 9, 8pm:  Ellie's appointment to find out what is in her lung has been moved up.  It was scheduled for the 19th, but today we were able to move it up to the 12th.  I am so excited to go in earlier!  They had found a spot on Ellie's lung at her last appointment, but couldn't be sure if it was a cold that had settled into Ellie's lung (she had a cough at the time) or if it was something more serious.  So they scheduled a CT scan for the 19th, but said they would be willing to move it up if her cough went away.  She hasn't coughed for several days now, so they agreed to move it up. 

I just want to get the tests done and know - one way or the other - what is happening.  It is much harder to not know and worry.  It has been on my mind since her appointment.  Especially at night, I lay in bed and think about the "what if's?"  I think hearing the word "cancer" for the second time would be worse than the first time because we will know what is ahead of us.  The first time, it was a blessing to be so naive.  But, I am prayerful that we will not hear that word and that the spot will be gone!

I will keep you updated after our appointment on Thursday.  Thank you always for your prayers and support.  We are blessed by you!!

Thank you to all of you who left comments after we found out about the spot and comforted us.  Mary guided us to the phrase, "Let go, let God."  And Rod and Shar reminded us of Philippians 4:6-7, "Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God.  And the peace of God, which transcends all understanding, will guard your heart and your minds in Christ Jesus." 

October 22, 8am: Yesterday was our long day of tests and scans at the Children's Hospital in Omaha.  Here is Ellie the night before.  I had told her to get a few toys together so she would have something to play with during the hour long trip.  She worked busily and then announced, "I'm ready!" and had 3 backpacks full of toys!

Ellie wasn't allowed to eat before her tests, which is always one of the hardest parts for her.  But, as always, she was a trooper about it. 

Here she is having an abdominal ultrasound. The ultrasound was very thorough - and long!  They really checked every part of her abdomin for over an hour.  Ellie was very good about laying whichever way they wanted her to: on her side, on the other side, on her back...  she just went along with everything and didn't complain.   She did tell me several times during the test, "I sure am hungry!"  Other than that, no complaints! 

Here is Ellie being lined up for a chest x-ray.  Tom went in with her for this test (usually only one parent can go in for each test, so Tom and I take turns).  When Ellie got out of this test, the only thing she told me about it was, "They took off my shirt so they could put another shirt on me (the hospital gown) and it wasn't nearly as cute."

Here she is getting a sticker for being good during the x-ray.

Below is Ellie getting her blood pressure taken while Tom reads her a story.  Ellie has a cough right now so she could not enter the oncology floor.  They cannot have anyone sick, even a little bit sick, around the kids receiving chemo.  So we were shuttled to a back room to have our vitals and check-up done.  That was disappointing to Ellie because there is a large play area and art center in the oncology area.  Instead, we sat in a small room as the doctors and nurses came to us.  That made the day seem a little longer.

Our doctor came to visit with us to go over all of the test results from the morning.  She said that they can see a small spot on Ellie's lung.  Because she has a cough, they aren't sure if it is simply a viral infection from her cold or it if is something more serious.  They cannot do any further tests until her cough is completely gone.  So they have lined up a CT scan in 4 weeks.  Of course, that seems like an eternity to me.  I am hoping her cough clears up well before then and we can move that appointment up. 

We just have to be positive and believe that that spot is related to her cough and not to something more menacing.  Her blood count was good and all of her other organs looked clean.  We just have to keep the faith that the spot on her lung will be gone when we return for the CT scan.  I must admit though, I cannot stop thinking about it.  It would truly be my worst fear coming true. 

But, as always, God is in charge.  I know that He knows what is best and I know that we must trust Him.  We do trust Him.  And we thank you for your continued prayers and for your support. 

Thank you also to my friend Connie - who has been going through radiation herself - for passing on this verse to me in Ellie's honor:  "Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance.  Perseverance must finish it's work so that you may be mature and complete, not lacking anything."  James 1:2-4

October 8, 5pm: Ellie had a haircut today.  This was the 2nd haircut of her 4+ years.  If you remember, the first one she had was after she started chemo and we knew her hair would be falling out.  We cut off her very long hair so that it wouldn't be so traumatic for her when it started falling out.  Her hair began growing back around August of last year.  We have just let it grow since then.  It has grown like crazy in these 13 months!  It was all different lengths and pretty shaggy, so we went in and had a trim today.  Ellie got the royal treatment.  Here she is under the dryer (while reading a magazine!).  And here she is after the cut.  I was just so excited that she needed a trim!

Other than crazy hair, Ellie is doing great.  She is feeling good and being a typical 4-year-old.  Over the weekend, her siblings, Mitchell and Lexie, attended the homecoming dance at their school.  Not to be outdone, Ellie chose to put together a festive outfit herself.  Notice the Husker cheerleading uniform, leopard tights, floral shoes, the boa, the 20 necklaces, the stickers on her arms...  she was very proud of her attire!  Lexie couldn't believe I would let her be seen like that around the other kids going to homecoming, but in the grand scheme of things, does it really matter?  You have to pick your battles, right? 

Ellie has been in a great, fun mood and feeling really good.  She has been cracking me.  Like when I took her to the children's museum a few days ago.  We we were in the bathroom and on the wall there was a poster advertising having your birthday at the museum.  Ellie asked me what it said.  I read, "Have your birthday here."  She said, "Why would anyone want to have their birthday in the bathroom?" 

I must admit that I have been having some fears lately.  The weird thing is that I was so strong when Ellie was going through the major things. I just knew that everything would be ok. Now that she is fine, I am paranoid.  That makes no sense!  For example, she had a bad headache last week.  I could not sleep because I kept thinking that she must have brain cancer.  Or when she had to use the bathroom 4 times at the musuem.  I wondered if she had a form of bladder cancer.  What is wrong with me?  I should be so relaxed now that we are over the worst of this.  I have no idea why I am now paranoid.  

I am sure my fears will be put to rest when Ellie goes back in 2 weeks for her full day of scans and tests.  I'll keep you updated on that appointment.

In the meantime, thank you so much for your prayers and support.  We truly know how blessed we are.  Thank you for being such incredible prayer warriors for us!!

I'll leave you with Lexie's confirmation verse.  She gets confirmed in a few weeks and recently picked this verse, "I have called you by name.  You are mine."  Isaiah 43:1 

September 18th 5pm: Ellie had a radiation checkup yesterday.  She goes for these checkups every 6 months.  Since it had been awhile since she had been to this hospital (she had radiation in a different hospital than she had chemo in), I was trying to help her remember this hospital on our drive there.  She said she couldn't remember going there.  As we pulled into the parking lot, she said, "Oh wait!  I remember this place because I threw up in their parking lot!"  She said it so matter-of-factly that it made me laugh!

Her checkup went great.  Her radiation doctor thought she looked really good and even released Ellie from returning for more checkups!  We were very excited about that.  Ellie still goes in for chemo checkups every 3 months, but she won't have anymore radiation checkups.  When someone ends radiation, they ring a special bell that symbolizes to everyone in the hospital that someone has completed radiation.  When Ellie ended her radiation treatments, she was too weak to ring the bell, but yesterday, she rang it loud and clear to the applause of all of the doctors and nurses!

We also found out that Ellie is 35 pounds.  If you remember, when we started this journey, Ellie was 30 pounds.  She then lost almost 10 pounds through surgery, radiation and chemo.  She has been fighting her way back to 30 pounds.  It's fun to have her getting well past that 30 pound goal!  Her new goal is to hit 40 pounds because that is when she can get a booster seat.  Most of her friends in preschool already have booster seats and Ellie is anxious to join them!  

After our doctor appointment (which is about an hour from our house), Ellie and I jumped in the car for a 2+ hour trip to watch her siblings in a cross country meet.   Mitchell and Lexie ran on a golf course and when we arrived, Ellie started running and running.  It was fun to watch her go from a stuffy hospital to running free in the course of an afternoon!

Thank you so much for your continued support of us.  I am so thankful to have such prayer warriors in our corner - even when I am not updating as much.  Thank you!  We are so blessed by you!

We continue to thank God for healing Ellie.  Yesterday, when Ellie was given the green light to not return for checkups, I called Tom and started to cry.  Of course, he thought sometime must have gone wrong at the appointment, but actually it was just such relief.  Each milestone that we pass is such a blessing.

God is so good!  Go God!!

"Those who worship Him must do it out of their very being, their spirits, their true selves, in adoration."  John 4:24

August 30, 12pm:  Ellie is doing really good right now!  She is loving preschool and dance class.  She is also having a great time in our neighborhood.  There are 15 girls in our circle and she simply needs to step outside to join the fun!

She is feeling very good and has lots of energy.  In fact, I think she is 100%.  It is fun to meet some new moms and kids through preschool.   Ellie looks so "normal" that they don't know our story.  You can't look at her anymore and know right away that she has battled cancer.  That used to be the case and people could tell she was a sick little girl just by a glance.  But now, upon meeting her, you can't tell that she has been through this journey.  It's fun to just be anonymous and not have someone know our story.  It's nice for Ellie to just be one of the kids. 

She made me laugh the other day when I took her to the Children's Museum.  At the museum, there was a play store, a restaurant, an airport... and also a hospital.  Ellie looked at that play hospital and then looked up at me.  She rolled her eyes and said, "Now why in the world would I want to go in there?!"  I guess she decided that she has seen enough of the inside of hospitals - she didn't need to go into a play one!

As always, thank you so much for your support.  It has truly meant the world to us.  I will continue to update this site.  Thank you to those of you who have encouraged me to do so.  I will just not update as often.  Thankfully, I don't have much to tell you!  Ellie goes in for a radiation check-up in September, but that is it for doctor's appointments in the coming weeks. 

We are blessed by you.  Thank you!!

"God is our refuge and strength, an ever-present help in trouble."  Psalm 46:1

August 13, 9am:  Please forgive me for not updating for a few weeks!  We have been having a busy summer and, thankfully, I haven't had much to report. 

Ellie is doing great.  Feeling good and having fun.  It's much different than last summer when she was finishing up chemo and was so weak.  We are enjoying this summer much more!

Ellie went to preschool open house yesterday and will start again next week.  She is very excited!  She has been having fun swimming, riding her bike, playing outside and going to the park. 

She is now in a routine of only going to the hospital every 3 months for check-ups.  So we don't do that again until October.  I am very prayerful that I have nothing to report, medically, until then!

I am struggling a bit with what to do with this website.  I'm not sure if I should continue to update - just not as frequently as it has been in the past, or shutting it down, or, I have had people ask me to put the website in book form to, hopefully, help other families who will go through the same journey.  I just don't know what to do.  I will pray on that.  I am so thankful to all of you who routinely get on the site and I apologize that my updates have slowed down.  You all have been so faithful to us and I just don't know how to "end" this story and website.  I need some guidance!

Thank you for always being by our side through this journey.  We have been so very blessed by all of you.  I just don't know how we would have possibly gotten through everything without you.  I know we are not out of the woods yet: Ellie's cancer can come back.  She has a higher rate of getting cancer than the average person.  She will live with one kidney and a re-connected intestine and could certainly have complications from either of those things, but I truly believe we have put the worst part of our journey behind us.  I just have to believe that. 

I thank God everyday for allowing Ellie to stay with us.  And I am so hopeful that He will continue to keep her on the path to recovery. I pray that He continues to heal her and make her stronger and stronger. 

I know we didn't always understand why we were sent on this journey, but I do know that God was with us and so were you.  Thank you!!!

"Trust in the Lord with all 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

July 27, 8pm:  We are home after a long day at the hospital, but we have good news.  All of Ellie's scans and tests were clean!  The doctors thought everything looked great. 

First, we found out that Ellie has grown 2 inches and gained 3 pounds since her last appointment.  That alone was exciting for us.  Then Ellie had many scans and tests.  Here she is playing a game with her siblings during a break.

Here is Ellie during some of her tests.

Ellie had a ultrasound of her heart and she thought her heart looked very funny.  It wasn't heart-shaped at all!  Here she is holding up a picture of her heart.

Ellie was a great sport throughout the day.  She was hungry because she couldn't eat until after her CT scan which was at about 11am, but other than that, she was a trooper!  

Thank you so much for the prayers and thoughts sent our way today.  We felt like Ellie would get a good report, but it always makes us a bit nervous.  In fact, Tom and I talked on the way home about how exhausted we felt.  Even though we hadn't done anything strenous, we think it is just the stress of the day and the fear that they will find something that makes us tired by the end of it.  

As always, we were overwhelmed by seeing the other children at the hospital and meeting different families.  It is truly hard to believe how many little children are battling cancer.  Unfortunately, the chemo floor was very busy today.  It's almost too much to bear sometimes.  Seeing all of those children who are bravely fighting.  Our prayers go out to them all.

We are very appreciative to you for your support and to God for allowing us to come out of this tunnel on the other side.  We are very blessed.

"Praise the Lord, o my soul.  O Lord my God, You are very great, You are clothed with splendor and majesty."  Psalm 104:1

July 26, 9pm:  Thank you to everyone who came to visit us at the Relay for Life.  We had a great time.  It was a very moving event.  The evening started with the survivors lap.  It is very powerful to see all of the survivors walking together as a group.  There were hundreds of them - every age, race, gen

der, ... cancer doesn't discriminate.  It was very poignant.  We think Ellie was the youngest survivor.  We didn't see anyone else who looked younger than her.  Actually, we didn't see anyone even close.  Ellie walked with my dad, who is a cancer survivor too.  Here is a picture of them (Ellie's curls are courtesy of Lexie).  They are both wearing survivor t-shrits.

We enjoyed walking around and looking at the luminaries and talking to friends.  Here is my mom, brother Jeff, and nephew Max, at our tent site. 

Here is our family.  We wore our, "Team Volk" t-shirts.  We had those made for Tom's first marathon and now wear them whenever we need to pull together as a family. 

Unfortunately, there was a storm during the event.  A downpour was accompanied by thunder and lightning.  We did have to finally give up and head home.  Mitchell and Tom refused to leave and stayed the entire night.  They walked most of the night and tried to light luminaries as the rained stopped and they dried out a bit.  They came home after the 6am closing ceremony.  I think they had a great father-son night. 

 Thank you also to everyone who donated to the American Cancer Society in Ellie's name: Papa Boo & Grandma Kate; The Gude Family; The Fahleson Family; Jeramie & Amy Swanson; Addie Scheve; The Bohling Family; The Melony Martin Family; The Frenzen Family; and two anonymous donors.  We are very thankful for the donations that will help the American Cancer Society do more research to help try and find a cure for childhood cancers.  Thank you so much!

Tomorrow morning we head to Omaha for a full day of scans and tests.  The hardest part for Ellie will be that she will not be able to eat anything.  I will let you know how the day goes.  We are not anticipating any negative news, but this day of tests is always a bit scary.

Thank you to everyone for all of the support and prayers.  We are so very blessed!

"Take courage, it is I.  Don't be afraid."  Mark 6:50