Ellie Grace Volk

July 25, noon: Our "Ellie Grace Prayer Circle" team has raised $2545 for the American Cancer Society!!  Thank you!  A special thanks to those who have donated since my update yesterday: Dan & Cathy Scholl, Derran Porath, Connie White, Katie Martin, Shawn & Jody Schulenberg, Mark & Tracy Stinson & girls, and Tracy Swan.  We are extremely grateful!

Here is the scoop on tonight: we will be at Haymarket Park.  The event starts with a survivor lap at 7pm.  They light the lumineries at 10pm.  The closing ceremony is 7am.  Please feel free to come out whenever and walk a lap with us!  We would love to have you come visit our tent.  We will be at site 107.  There will be a map so you can find us.  We will eat, walk and have fun.  We would love to see you! 

I will update tomorrow with all of the details from the cancer walk tonight.  Thanks to all of you for your support and prayers.  We are blessed!!

July 24, noon: Ellie had a long day yesterday,  but it all turned out well.   She had several tests and the results we have gotten back so far have all been great.  No suspicious spots or anything that gave them alarm.  The area where her right kidney used to be still looks clean.  Her remaining kidney continues to grow, which is a good sign.  Ellie had a rough day as she got very sick.  She wasn't allowed to eat and then she had to drink the liquid which helps her organs show up on the CT scan.  She threw up quite a bit all day.  But she was a trooper!

Thank you so much to all of you who continue to contribute to the American Cancer Society in Ellie's name.  Although the American Cancer Society website doesn't show it, we are at $2095!  That is double our goal!  Several people have given us donations directly  to pass on to the American Cancer Society.  Those don't show up on our totals yet.  We are overwhelmed at how generous you all are.  Since my last update, a special thank you to these donors: Lewayne & Nancy Erickson, Mark & Sara Fahleson, Sue & Buzz Herman, Addie Scheve, Jennifer & Ray Smith, Jeramie & Amy Swanson, and Katie Wrede.  We also had a local business that wanted to remain anonymous that donated $500 in Ellie's honor!  We are so blessed by you!  And we are excited to raise more money for cancer research.  Especially after our hospital visit yesterday and seeing how much Ellie is helped by the amazing progress that has been made in medical research.  Thank you!

"I will build you up again and you will be rebuilt."  Jeremiah 30:3

July 22, noon: WOW!  We met our goal for the American Cancer Society in 5 days!   We are currently at $1150 and have surpassed our $1000 goal.  Thank you!  We are so excited to raise money for cancer research. 

Of course, we aren't going to stop raising money.  Feel free to continue to visit the website at www.main.acsevents.org/goto/elliegracevolk.  I cannot wait to see how much we raise before the cancer walk on Friday!

A special thanks to all who have donated so far: John & Rhonda Bills, Jim Booher, Jim & Kathy Booher, Traci Chapek, Amy Descombaz, Angie Dougherty, The Frenzen Family, Jeff & Jen Freirchs, Melanie & Marvin Gutz, Neal & Bonnie Kanel, Julie & Curtis Klein, Melony Martin, Amy Stowell, Kathie Tilts, Della Tschetter & Kelly Volk. Thank you!!

Ellie is doing great today.  She is very excited because her preschool teacher is coming for a home visit before Ellie starts preschool next month.  Ellie has been busy picking out clothes in anticipation of her teacher's visit.  The outfit she has on in the picture is one she had on about 3 outfits ago before she decided it wasn't teacher-worthy.  We will probably make it through her entire closet before her teacher arrives!

Thank you all so much for all you do for us and for cancer research.  We are so grateful and blessed!!  We will continue to update on the progress. 

We will also update after our visit to the hospital tomorrow.  Ellie will have a series of tests.  The most difficult thing for her will be the fact that she cannot have anything to eat after midnight tonight.  She always wakes up very hungry so I'm sure she will not be happy with us tomorrow morning!  We'll let you know how it goes.

"...I will comfort you..." Isaiah 66:13

July 20, 7pm: Thank you so much to all of you have already donated to the American Cancer Society in Ellie's name for the Relay for Life cancer walk we will be doing on Friday.  We are so grateful.  We know that it is only because of cancer research that Ellie's prognosis is good.  Thirty years ago, doctors gave patients a 50/50 chance of survival with a Wilm's Tumor.  Today, Ellie's chances of survival are 90%.  We want to help cancer research however we can!

A special thank you to: John & Rhonda Bills, Neal & Bonnie Kanel, Amy Stowell, Kathie Tilts, and Kelly Volk for their donations.  To visit our website for the cancer walk, you can go to: www.main.acsevents.org/goto/elliegracevolk.  Today someone asked me if Ellie bracelets were connected to the American Cancer Society's walk.  They are not.  Our team name for the cancer walk is The Ellie Grace Prayer Circle - which is the same name as her bracelets.  I'm sorry if that is confusing.

As for Ellie, she is doing great!  She feels wonderful and has tons of energy.  Our biggest challenge right now is trying to keep her out of the sun and heat too much.  With her fair skin - and no hair - she gets hot very quickly.  But she wants to be outside all day.  I am constantly making deals with her ("We can play outside for 20 minutes and then we need to go inside for 10 minutes and take a break.")  She never wants to take a break!  But we love that she is a normal, fiesty 3-year-old.

We head back to Omaha on Wednesday for a series of tests.  She will get an EKG, a CT  scan, and an ultrasound.  They want to make sure there are no spots or anything suspicious anywhere.   

Thanks for your prayers, support and kind words.  We are eternally grateful!

"I have made you and I will carry you."  Isaiah 46:4

July 16, 4pm: We are going to join the American Cancer Society's Relay for Life cancer walk next week.  It will be held in Lincoln in Haymarket Park on Friday, July 25th.  We will be raising money for cancer research in Ellie's honor.  

To join our efforts, you can go to this website: www.main.acsevents.org/goto/elliegracevolk.

If you live in Lincoln, we would love to have you come visit us on the 25th!  We will have a tent at Haymarket Park.  Please stop by to walk a lap with us or simply eat some goodies.  We would love to see you!

Here is the schedule: the walk will start with a Survivor's Lap at 7pm.  Ellie will be able to join that lap as a survivor.  We will then be walking all night until 7am.  We will have someone from our team walking at all times, but, in between, we will also be having fun, eating, and enjoying the night.  They will have kid's games going until 9:30pm.  At 10pm, they will light the luminarias that you can purchase to honor someone who has battled cancer.  The luminarias will line the walk and light our night. 

You can join us by donating to the cause, by joining our team (we'd love to have you!) or by simply stopping by to visit us.  We are excited to help the American Cancer Society in any way we can.  We know Ellie's chances are so much better because of the strides that have been made in cancer research.  Our goal is to raise $1000.  Tom and I have donated the first $100.  

Check out the American Cancer Society website listed above for more information.  Thank you!! 
 

July 15, 5pm: We officially have a bald little girl.  Ellie last wisps of hair are gone.  She had just a few little strands left and they were getting in her way.  I asked her if she wanted me to shave them off and she said yes.  Here she is after our cutting session.  She looked in the mirror afterwards and thought she looked great.  She seems very happy to not have the wisps in her eyes anymore.  I really can't believe how long Ellie held onto her hair (as little as it was).  They told us she would be bald within 6 weeks of beginning chemo and she started that in January!   

Besides Ellie's new hairdo, she is doing great.  She is feeling good and having a great week.  We don't go in for any tests this week, so she is getting stronger every day.  

I will be updating the website later today or tomorrow about the Relay for Life cancer walk we will be doing in Ellie's honor next week.  I'll get details out soon!

Thanks to all of you for your continued prayers!!

"My soul finds rest in God alone; my salvation comes from Him.  He alone is my rock and my salvation; He is my fortress, I will never be shaken." Psalm 62:1

July 10, 7pm:  Ellie continues to do great.  She is feeling wonderful and has tons of energy.  Chemo didn't seem to get her down as much this time.  She recovered quickly and we are so excited that she doesn't need to go back for more chemo treatments!  We have a week off of appointments and tests and we are loving it.  We will head back for a series of tests soon.

We are trying to have Ellie do as many "normal" kid things as possible.  So this week she began swimming lessons.  She loved it!  After the lesson, she told Tom, "I can now blow bubbles, jump off the side, dive, float on my back, and kick!"  It was a very productive lesson! 

We are thankful that she is feeling so good.  We are anxious to begin a new phase of our journey: recovery!  We are looking forward to Ellie getting stronger, gaining weight, and beginning to get her hair back.  We have heard so many stories of people who undergo chemo, lose their hair, and then when their hair grows back, it is completely different from what it was before.  She may be a curly brunnette!  We are just going to be excited to see any new hairs sprouting on that beautiful bald head! 

Thanks to all of you for your prayers and support.  We are uplifted by so many and we are extremely grateful!

"Give thanks to the Lord, for his is good; His love endures forever." Psalm 107:1 

July 5th, 8am: Just a quick update to let you know that Ellie is doing wonderful.  She got over the nausea very quickly this time.  She was not feeling well for the first half of Thursday (the day after chemo), but since then, she is feeling great.  She is running around and has tons of energy.  We are so thankful!

We hope you are having a fun, safe holiday weekend! 

July 3rd, 8am:  Ellie's last chemo treatment is behind us!  We had a long day yesterday.  Everything seemed to take longer than usual.  We waited an hour before she was even seen.  Then an hour wait for her blood work results.  Then an hour wait for the chemo drugs to be delivered.  Then an hour of IV fluids before the chemo drugs.  Then the drugs....  you get my point.  It was a long day!  But Ellie held up pretty well.  She is simply tired of this entire process.  She was such a great patient in the beginning, but the last few times, she has been very fiesty.  She knows what is coming and she doesn't like it.  Yesterday as we walked back to get her blood drawn from her port, she said, "Mommy, PLEASE don't let them do this!"  It breaks my heart that she has to go through this. I am so thankful that we only had 6 months of chemo.  I cannot imagine the families that have chemo for years.  My heart goes out to them.

Here is Ellie as the chemo drugs and fluid were administered by IV.  She received two different chemo drugs.  She laid on me and got very lethargic.  She also threw up 3-4 times.  It's rough getting those drugs in your system.  But it's amazing how quickly she can bounce back.  After throwing up several times and almost passing out in the hospital, she was asking for a malt by the time we got to the parking garage.  Here are the kids enjoying malts.

We all went to the appointment yesterday since it was Ellie's last chemo treatment.  We are so very, very thankful that we are done with treatments.  Now we will head back in a couple of weeks for a series of tests.  They will do a heart test, CT scan, ultrasound, blood work...  They want to make sure that everything looks good and they want baseline tests to compare future tests with.

For now, we will let Ellie get stronger.  The last time that Ellie had chemo, she was nauseous for several days afterwards.  So we will simply be watching her and taking care of her.  What a blessing it is to know that we are getting over the effects of chemo for the last time!  Praise the Lord!

Thank you so much to all of you for continuing to pray for Ellie and supporting us.  We are so appreciative!!  I will update tomorrow to let you know how Ellie is recovering from this round of drugs.

"Praise the Lord." Psalms 111:1  

June 28, 10am:  Today marks the 6th month anniversary of Ellie's diagnosis.  We learned she had cancer on Dec. 28th.  What a difference 6 months can make in your life! 

When your child is diagnosed with cancer, it affects you in ways that you would expect: you're devastated, heartbroken, scared...., but it also affects you in ways you wouldn't expect: your faith deepens, your family gets closer, your marriage gets stronger, you spend more time together, you find joy in all of the small things....  I have said many times that this journey has had more blessings than not.  I truly mean that.  Of course, we would love it if Ellie had never fought this battle, but it has also been amazing.  As a family, we have all learned many things.  Our two teenagers have had to mature quickly and take on responsibilities they never expected.  Tom and I had a choice at the very beginning to allow this to be a strain on our relationship or to let this bring us even closer.  We all spend more time together.  We have let all of the little things in our life go.  The things that used to make us run in a million different directions.  Now we cherish the time we have together.  It's so true that you just don't know what the bend in the road will bring.  None of us are promised tomorrow.  No one knows what lies ahead in their journey.  But we can cherish today and what we have been given right now.  The gifts and blessings that we each receive daily are amazing.  But we have to be looking for them.  We have to believe that each day holds a miracle.  We have to look for the good.  Every situation can be looked at in different ways.  It's up to us to choose to be positive and believe only great things are coming our way.  Even cancer can have amazing blessings.  I know that sounds weird.  But it is so true.  

Ok, I know I am getting a little sappy here.  But I am just so grateful for these last 6 months.  Ellie is still here and we praise God for that.  Each day is a gift.  

The biggest lesson in all of this has been our faith journey.  We have all grown spiritually so much.  We know that it is only by the grace of God that Ellie is here.  He has given us this blessing and we truly praise Him for all that He has done.  He knew she would have cancer.  He chose her to carry this burden.  He gave her a strong, determined spirit because He knew she would need it.  He gave her the strength to handle all that has been thrown at her.  He gave the doctors the skills and knowledge to help her.  He orchestrated so many things in her life to fall in line a certain way so that, not only would she make it through this, but she could be used to give glory to Him.  And we certainly do give Him all of the glory!   

We are beginning the celebration of ending our chemo treatments.  Ellie has her FINAL treatment - prayerfully! - on Wednesday.  If all goes well, she will then simply have check-ups after that.  They are going to watch her closely.  At first she will have frequent check-up, tests, scans.. but then she will begin going every 3 months, then every 6 months, then every year.  They will be monitoring her closely until she is 7-years-old.  If she doesn't have any relapses, she can be declared cancer-free at that time.  She needs to go 5 years without any cancer before they can officially say she is cancer-free.

Here is a picture of Ellie with a cake and balloons that our friend Sue brought over to begin our count-down celebration.  Thanks Sue!

As always, thank you so much for all of your prayers, thoughts and kind words.  Another blessing of this journey has been the incredible support we have received from all of you. We are very grateful.

"We give thanks to you, O God, we give thanks." Psalms 75:1

June  24, 10am:  Ellie continues to do great.  She has had a little bit of nausea.  They said she could have nausea up to  two weeks  after a  treatment.  It just  comes and goes randomly.  Other than that, she is doing really good. 

Here she is at the park yesterday.  We went to Porter Park.  Ellie said, "Hey, I have a port so I can go there!" 

We praise the Lord that Ellie is doing so good.  We are extremely grateful!!  She doesn't have treatment this week so we are looking forward to letting her get stronger and get over the nausea.

"The name of the Lord is a strong tower; the righteous run to it and are safe." Proverbs 10:17 

June 20, 3pm:  Ellie is doing great.  She is feeling good and having a wonderful week.  We haven't had any nausea this week at all.  It's been great!

I wanted to share a flyer with you.  You can click here to see it: Childhood Cancer Ambassador.  Ellie has been asked to be the Optimist's Childhood Cancer Campaign Ambassador Child.  Hopefully, Ellie's story will help the Optmist's to raise money to help kids in Nebraska that have cancer. They raise money for cancer research and to help fund camps for childhood cancer patients.  They also help the families of the patients in a variety of ways. For those of you in Lincoln, information will also be in the Lincoln Journal Star's Neighborhood Extra on June 21st.  We are so thankful to the organizations that help childhood cancer patients and their families.

We wish you a wonderful, miracle-filled weekend. 

"Many, O Lord my God, are the wonders you have done."  Psalms 40:5 

June 18, 5pm:  We went to Omaha today for an ultrasound.  The hardest part of today was that Ellie couldn't eat anything before her appointment.  She woke up hungry and couldn't understand why I wouldn't feed her.  I explained that she couldn't have anything in her tummy when the doctors took pictures of it.  I told her that she could eat whatever she wanted as soon as her appointment was over.  She didn't like that answer and went into survival mode.  She would wait until I wasn't watching and then she would grab some gummies out of the kitchen and take off for the living room.  Or I would find her trying to get the Cheerios box open under the kitchen table.  She was going to do whatever it took to get herself fed!

We finally got the starving child to Omaha for her appointment.  When we went into the radiology department and got to the registration desk, Ellie asked the receptionist, "Hey, do you have any food?" 

Here is Ellie during the ultrasound.  The purpose of this ultrasound was to look at the area where her tumor and right kidney used to be.  They want to make sure they don't see any spots that might be suspicious.  They also look at her remaining kidney to make sure it is functioning well.  Everything looked good.  They did see a few dark areas that they don't think are cancer, but they feel they are areas where Ellie had clips in during surgery and those areas now have some calcification.  They may do more tests to see if that is indeed what it is.  They don't feel it is anything to be worried about.  We will get more results back on Friday.

We left our appointment and headed straight to a restaurant.  Here is Ellie and Mitchell finally being able to eat (Mitchell and I hadn't eaten either as we didn't want to eat in front of Ellie.)  As we were eating, Ellie said to me, "Don't ever tell me so many no's about eating ever again!"   I certainly hope I don't have to!

I will leave you with some passages from a card a friend gave me last night:
"I will comfort you..." Isaiah 66:13   "I will strengthen you..." Isaiah 41:10  "I will give you peace..."  Leviticus 26:6  (Thanks Tracy!)

June 15, 3pm:  Ellie is doing good.  This week of chemo was a bit rougher than most. She was just so nauseous.  We had chemo on Wed and still today, Sunday, she woke up with the dry heaves.  She has been on her prescription anti-nausea medicine all week.  She isn't nauseous all of the time.  It just kind of comes and goes.  Otherwise, she feels great and is running all over. 

Her new thing is to try and make us laugh at dinner.  The dinner table is her version of a comedy club.  She saves her knock-knock jokes (which she makes up herself) and her funny comments for the table.  If she finds something that we really laugh at, she'll repeat it non-stop.  

We are looking forward to a new week.  We do not have chemo this week so Ellie should have a chance to regain her strength.  We will head to Omaha on Wed for an ultrasound, but that's it this week.  We are excited to allow her to get over this round of nausea and help her get stronger.

We praise God for the medical personnel and advances in technology that allow Ellie to get closer and closer to being cancer-free.  We count many, many blessings in our lives!

If you will allow me, I must also tell you about Lexie.  I know the other two kids sometimes feel left out with all of the attention Ellie gets.  They are great about it - and would never admit it - but I know it is hard for them at times.  So please allow me to shine the spotlight on Lexie a little.  Yesterday, she won the triple jump at a state track meet and qualified to go onto the Junior Olympics national meet.  She is very excited!    

We thank you all for your continued prayers and kind words.  We are blessed to have you all in our lives.

"Fight the good fight of the faith." 1 Timothy 6:12 

June 11, 5pm:  We are home from our chemo treatment.  Ellie was not in the mood for this today.  Usually, she is a trooper and does whatever is asked of her.  Today, she marched into the chemo department and announced to the nurses, "You can weigh me today, but that's it!"  When she was informed that they would need to do much more than just weigh her, she took off for the door and tried to escape.  I think she is simply tired of all of this.  She knows the routine well and knows what they are going to do.  She didn't want to do it today.  But she ended up being a trooper anyway.

Both Mitchell and Lexie accompanied Ellie and I to our appointment.  Here are the kids as we arrived at the hospital.  Thankfully, our appointment was very short today.  For whatever reason, everything worked perfectly and we didn't do much waiting around.  We were only there about 3 hours. That was great!

Ellie started with a check-up and then had her blood drawn.  As we waited for her blood results, we went to a little carnival the hospital was having.  Here is Ellie playing mini golf.

Her blood results were good and she was given two different chemo drugs.  As she was sitting on my lap and they were administering the drugs to her, I saw a sticker on one of the vials that read, "Fatal if given incorrectly."  I had a lump in my throat as I thought of how serious this all is.  I still sometimes cannot believe that this is our life right now.

After Ellie was given the drugs, she began to throw up almost immediately.  We then needed to go have a chest x-ray done.  They continue to monitor her lungs to make sure no spots show up there.  We don't have the results of that x-ray back yet.

As we left the hospital, Ellie continued to throw up (in the elevator, in the parking ramp....)  I felt so sorry for her!  She started feeling much better on the ride home.  As we approached Lincoln, she told me, "I am done throwing up.  Now I just have the pick-ups!"  (she meant hiccups)  

We will continue to watch her tonight and keep her comfortable.  Thanks so much for all of the prayers today.  We so appreciate it.  I know that the entire hospital is lifted up by you.  We are extremely grateful.

This verse if from a devotion I read before we left this morning, "My flesh and my heart may fail, but God is the strength of my heart and my portion forever."  Psalms 73:26
 

June 9, 8am: I apologize for not updating for awhile.  We were out-of-town attending a family reunion.  Ellie took her first airplane ride.  Here she is meeting the pilot.

We had a wonderful time and Ellie continues to feel great.  The only thing that is heavy on my heart right now is how obvious it is to the outside world that she is sick.  I had so many strangers come up to me during our trip and ask me about Ellie.  Everyone was very nice and meant well, it was just difficult for me.  Whether we were in line at an attraction, at the store, on the plane...  I would have people ask, "What kind of cancer does your daughter have?" or "Did she lose her hair because of cancer?"  Questions like that.  People were very sweet and had only concern, but it made me realize how obvious it is to everyone that she has an illness.  Of course, Ellie was happily oblivious to everything.  She had a blast everywhere we went.  A few of these well-meaning strangers would lean down and ask Ellie, very seriously, "How are you feeling?"  Ellie would joyfully shout, "Great!"

We head back to chemo on Wednesday.  Ellie has her last treatment of "bad" chemo (is there a "good" chemo?!).  Of the three chemo drugs she receives, this drug affects her the worst.  She only receives this drug four times during her treatment and this week will be her last round of this drug.  We are thankful for that!

Thank you for your continued support and prayers.  We are so incredibly blessed by the outpouring we receive from all of you.  This journey has had so many blessings along the way and one of the biggest is our incredible circle of supporters and prayer warriors.  We are blessed beyond belief and we very grateful.

"Finally, be strong in the Lord and in His mighty power." Ephesians 6:10

June 3, 11am:  I wanted to share a photo with you.  Last night we were playing with sidewalk chalk.  Ellie made a self portrait.  I noticed she had drawn a circle on her chest.  I asked what that was.  She said, "That's my port!"  (The port is implanted in her and they use it to administer chemo drugs).  She then said, "I didn't draw any hair because I don't have any!"  It's really a blessing that she is only 3-years-old while going through this.  It is no big deal to her to be almost bald and have a port.  That's just who she is.  She doesn't feel self-conscious.  She doesn't feel people stare at her when we are running errands.  She doesn't notice other adults whisper to me, "What's wrong with your daughter?"   She simply is who she is.  And she is loving every minute of life.  She continues to be joy-filled!

She doesn't have chemo this week.  We love her weeks off!  She will have the last round of "bad" chemo next week.  But for now, we will cherish her great health, her energy and her strength.

We wish you a blessed, miracle-filled day! 

June 1st, 9pm:  Hi, this is Tom.  Ellie continues to get stronger and is very energetic.  Her appetite is good and she's enjoying all the things that summer brings.  Ellie has another week off of treatments and we're thankful that she has more time to recover and gain strength. 

We've had a lot of questions about Ellie's chemo treatments and also know that many of you have had family or friends that have been affected by cancer and have received some type of chemotherapy.  Ellie has received 3 different drugs; Vincristine, Dactinomycin, and Doxorubicin.  These drugs are administered through a port that is located under her skin below her right arm.  This port was inserted during her surgery and also allows the doctors to draw a blood sample prior to each chemo treatment.  The blood profile provides much medical information which helps assess the treatment process. These drugs are part of a well documented treatment protocol for Wilms' Tumor patients.  We're grateful for many years of cancer reseach and the dedicated professionals who have worked to improve the cure rate for Wilms' Tumor patients. 

During Ellie's surgery and treatment, she has received blood tranfusions.  We're thankful for people who donate blood and encourage you to do so.  It's a great way to help someone in need. 

We appreciate your continued prayers.  Our family is strengthened by the support we have recieved from so many.  It's a huge blessing to know that Ellie is being lifted up in prayer. 

"May the God who gives endurance and encouragement give you a spirit of unity among yourselves as you follow Christ Jesus, so that with one heart and mouth you may glorify the God and Father of our Lord Jesus Christ."  Romans 15:5-6