Ellie Grace Volk

May 28, 2pm: Ellie is doing great.  She has bounced back from last week's chemo and is feeling wonderful.  In fact, she has been busy making us laugh.  This weekend, we worked in our house and yard, painting, cleaning, planting... Ellie felt her job would be entertainment.  First, she put on a dance outfit and did several dances for us while we worked (my favorite was the Monkey Dance).  She then ran and put on a cheerleading uniform and did cheers for us. 

We are so thrilled that she bounces back from her chemo treatments quickly.  We thank God that she is feeling good and is getting stronger.  We praise Him for allowing her to be resilient.  God is granting much strength and determination to Ellie and, for that and so much more, we are extremely grateful.

I know I have used this verse before, but it reminds me of Ellie so much: "Let your light shine." Matthew 5:16

May 23, 7am:  Mitchell and Lexie joined Ellie and me for our chemo day as they had had their last day of school the day before.  I am sure going to chemo was not what they wanted to do on their first day of summer, but they were great about it.  Here is a picture of Lexie and Ellie at the hospital.  They had gone through their closets and found outfits that looked alike. They said they were twins.  Ellie loved the thought of being Lexie's twin - it really took her mind off of the day's events that were ahead of her.

We got to the clinic and they gave Ellie a check-up.  We were excited that Ellie had gained a pound!  It has been a long time since she gained weight.  We were then sent to Radiology for a chest CT scan.  They needed to look at her chest because during the surgery to remove her tumor, they found she had a suspicious nodule on her lung.  They removed it during surgery and did tests on it.  They found it was not cancerous (thank God!), but they want to continue to make sure nothing is growing in her lungs.  So we went to Radiology where they told me they would need to sedate Ellie since she was only 3 and they were sure someone that young could not lay perfectly still for the scan.  I assured them that she has had so many X-rays, ultrasounds, CT scans, radiation.... that she can certainly lay perfectly still on her own.  Although they argued with me a little, they agreed to try it without sedation first.  Ellie laid perfectly still with her hands above her head and did everything they asked.  They said she was the best patient (of any age) that they have had for awhile.  I was proud of her, but also sad that she is so good at these tests.  A 3-year-old shouldn't know how to lay still for a CT scan.

Tom's sister, Sue, came to visit us at the hospital as we headed back to the hemotology department.  There Ellie was given 2 different chemo drugs.  Although I had given her the anti-nausea medicine, she threw up right after she was given the drugs.  They gave her some fluid through an IV to help her cope with the drugs better.  After she had received the fluid, we were allowed to go home.  Ellie continued to throw up and be lethargic all evening.  I knew she wasn't feeling well when she said, "I think you should put me to bed."  She is usually fighting bedtime!  

Yesterday morning Ellie was much better.  She bounced back and is running around again.  She still doesn't have much of an appetite, but otherwise is doing good.

Thank you so much to all of you for praying for us.  We are so appreciative of each of you!  This journey would be so long and scary without the support and love of our family and friends.  Thank you!

We thank God also.  We are grateful that God is restoring her health and allowing her to become cancer-free.  We trust that He will allow Ellie to emerge from this journey and be stronger than ever!  All 5 of us have become stronger because of this battle and we are also grateful for that.  We know you cannot enjoy the moutaintops until you have been through the valley.  I cannot wait to see the amazing mountaintops that are in the future!

"God is able to provide you with every blessing in abundance, so that by always having enough of everything, you may share abundantly in every good work."  2 Corinthians 9:8  

May 20, 9am: Ellie continues to do great.  She is feeling wonderful and full of funny comments.  She is eating like crazy and getting stronger and stronger.

We head back to chemo tomorrow.  Ellie will get two chemo drugs at her appointment.  We will pray that this doesn't set her back too much and that she handles everything well.  Since she has had two weeks off, hopefully, she will be strong enough to handle the chemo drugs well and won't get too sick. 

We will update when we return home from chemo tomorrow.

I will leave you with a very simple phrase today.  Ellie and I just returned from taking the older kids to school.  In the car, Ellie always requests to hear the song, "Your Grace Is Enough".  She sings along at the top of her lungs.  Today, as I listened to her, I was struck by this 3-year-old cancer patient singing loudly to the Lord, "Your grace is enough for me!"  I think that phrase pretty much says it all.   We are amazed and blessed that the Lord grants us His grace.   What more do we need?

May 16, 2pm:   Ellie is doing good.  She feels great.  In fact, she is going through an independent phase where she insists on dressing herself.   For the first couple of days of her picking out her own clothes, I would try to steer her towards things that matched.  I finally thought, "Why am I arguing with her?"  You have to pick your battles, right?  So Ellie is now happily picking out her own outfits.  After she got dressed yesterday, she looked in the mirror and said, "Wow, I look like a princess!"  Not sure what mis-matched country she would be a princess of, but she was thrilled with her choice.  Then this morning, she said, "That outfit from yesterday was so good, I'm going to wear it again!"  So here is Ellie in her outfit from yesterday and today.

It's just fun to have her in great spirits and feeling good enough to be a determined, independent 3-year-old!  She heads back to chemo next week, so we will enjoy the strength and good health she has right now. 

We are filled with joy and wish all of you a blessed weekend!  "My heart leaps for joy and I will give thanks to Him." Psalms 27: 7

May 14th, 3pm:  Ellie continues to do great.  She is feeling wonderful and has tons of energy.  Everything is going great.  Every once in awhile, something will happen that will break my heart.  Like the other night when Ellie was brushing her teeth and looking in the bathroom mirror.  She said to me, "I wish I had my hair again so I would be beautiful."  Of course, I assured her that she is beautiful as she is.  But it hurt my heart to hear her say that. 

The kindness of strangers continues to amaze us.  Here is another example.  I am including a picture of Angie Dougherty and Amy Lockhart.  Angie is a consultant in my unit in Mary Kay.  She forwarded Ellie's website at her workplace.  One of her co-workers, Amy, saw the site and contacted me to ask if she could run the Lincoln Half-Marathon on Ellie's behalf.  I didn't know Amy before this, but she wanted to honor Ellie in this way.  It really touched us that she wanted to do that.  Thank you to Angie and Amy!  Congrats on finishing the race!!

Thanks to all of you who support us.  Every single day, we are again reminded how blessed we are.  Whether it is a kind gesture, an uplifting word, prayers sent our way, or a stranger reaching out.  This journey has been amazing and has taught us much.  Thank you.

"I will give thanks to the Lord because of his righteousness and will sing praise to the name of the Lord Most High." Psalms 7:17 

May 11th, 1pm:  Happy Mother's Day to all of the moms out there!  This journey has given me a whole new appreciation of being a mom.  What a blessing it is!  I thank God every day for allowing me to raise 3 of His children.  Of course, this Mom's Day, I am especially thankful to have healthy kids.

Ellie is doing great.  In fact, I haven't updated for several days because we have been busy having fun.  She has tons of energy and is feeling really good.  She has been eating a lot and is starting to fill out a little bit.

She doesn't have chemo this week so she will be able to regain her strength back even more.

Our continued thanks to all of you who pray for us.  We are incredibly blessed by you.  The Lord has been so good to us and has allowed us to widen our circle of friends through this journey.  Thank you!!

"Devote yourselves to prayer, being watchful and thankful." Colossians 4:2

May 4th, 10pm:   Ellie is doing really good.  She has made a wonderful rebound since our rough day on Wednesday.  She  is feeling much better.  In fact, she is back to running around and  laughing.  We are so thankful!!

We watched the Lincoln Marathon today and Ellie had several people running in her honor!  We were so touched by those who wanted to run for her.  Here is a picture of Tom and Ellie with Britt Ehlers.  Britt started an organization called "Runners With A Reason".  This organization encourages people to find a reason to run.  Each runner had a purpose and raised money for something close to his/her heart.  Tom raised money for "Angels Among Us" which is a non-profit that helps families dealing with kids with cancer.  He and Britt both ran for that organization, with Britt also honoring Ellie by putting, "I run because Ellie Grace Volk has shown me what strength is" on his shirt.  Thank you Britt!

As we watched Tom run the marathon today (it has been 13 days since he ran his last marathon!), Mitchell decided to jump in and run the last 8 miles with Tom.  Here they are at the finish line.  

We are so incredibly thankful today: the boys had a fun race; Ellie is feeling great; and Lexie turned 13!  It was great day!   

God is blessing us abundantly and we are so grateful.  That He is allowing Ellie to continue to pull through this rough journey is amazing.  She has had so many tough days, but she bounces back and seem stronger than ever.  He gives her renewed energy and determination.  We are so full of gratitude!

"Be joyful always; pray continually; give thanks in all circumstances, for this is God's will for you in Christ Jesus."  1 Thessalonians 16-18 

May 1st, 10am:   Yesterday was such a long day for Ellie, but she was a trooper.   We got to the hospital and Ellie had her blood work done and a check up.  Here she is playing while we wait for the blood work results. 

Then we were off for two heart tests.  She had a EKG and an echo cardiogram.  Chemo drugs can sometimes affect the heart and they need to check to make sure nothing negative is happening with Ellie's heart.  Her chemo drugs actually go directly to her heart through a tube that is implanted in her.  We saw that tube in her heart during an ultraound yesterday - which was a little hard for me to see.  Here is Ellie during the EKG.

Ellie's blood work came back good and we were able to start the administration of the chemo drugs.  Ellie was given two drugs, one being the harshest drug she receives.  I think the two weeks off of chemo made her stronger to handle both drugs.  She stayed alert during the IV and even ate lunch while she received the drugs.

Here is Ellie as we left the hospital.  She feel asleep as I carried her out.  It was really a long day for her!

When we arrived home, Ellie did throw up several times - even with her anti-nausea medicine.  We also dealt with a fever.  She hasn't had a fever during this entire chemo journey, but last night she started getting high temperatures.  We were instructed to go to the emergency room when she reached 102.  She lingered at 101.5 and never hit 102 - thankfully!  It was a long evening, but she was finally able to have a good night's rest.  This morning, I gave her the anti-nausea medicine first thing and she seems to be doing great.  We'll watch her today and keep her comfortable.

Thank you so much to my good friend, Suzie, for sending me a devotion yesterday.  I read it at the hospital and loved it.  In part, it said: "The fact is if you are God's child, then your problems are His problems.  And He's much better at fighting your battles and solving your problems than you will ever be.  Your job is to trust Him to work it all out.  Perhaps the reason we have so many tired, fatigued, and discouraged Christians is because we think, 'It all depends on me.'  When you face a seemingly impossible situation, don't be afraid and don't be discouraged.  Has God ever lost a battle?  No.  He doesn't lose battles.  Remember who the battle belongs to.  Trust that He is able to deliver you."

Suzie, thanks for the reminder to give it all up to God!  We will trust and believe in Him.  And thanks to all of you for praying for us yesterday.  We can feel the prayers!!   

I will leave you with the verse that was in Suzie's devotion: "But you will not even need to fight.  Take your positions; then stand still and watch the Lord's victory.  He is with you, O people of Judah and Jersusalem.  Do not be afraid or discouraged.  Go out there tomorrow, for the Lord is with you!" 2 Chronicles 20:17

April 29, 10pm: Ellie spent the day at a track meet watching her brother and sister.  She had a great time and ran all over the place.  She continues to feel wonderful. 

We are off to the hospital tomorrow.  Ellie will get two chemo drugs (one being the harshest one she receives) and she will also get an EKG and a few other tests.  It will be a long day for Ellie, but we will keep the spirits high and have fun with her too.

We will try not to have anxiety or fear because we know God is in charge and loves Ellie with an everlasting love.  We will update when we return home.

"Cast all your anxiety on God because he cares for you." 1 Peter 5:7 

April 27, 10pm: Ellie is doing better than ever right now. She has tons of energy and seems to be constantly hungry.  It is fun to see her eating so much and gaining strength. I would have to say that this is the strongest she has been since she was diagnosed. The two weeks off of chemo have made such a difference.

We head back to chemo on Wednesday. We have the "bad" chemo that day. Ellie receives this drug only 4 times during her 6 months of chemo. She has gotten it twice so far and both times she became quite sick. I am fearful that we are going to go from a mountaintop to a valley fairly quickly. I wish we could just stop this journey right now and let her continue to get stronger and fully recover. But, of course, that cannot happen just yet.

But the end is near. When we started chemo in January, it seemed like July was so very far away. Now, we finally see light at the end of the tunnel. We know we will soon be done with chemo treatments. Ellie will continue on this routine of having chemo every 3rd week. That means, she only has 4-5 treatments left! After everything she has been through, we are so thrilled to have her this close to the finish line. We are amazingly blessed!  It brings me to tears to think of how much God has guided us and granted us so many, many blessings.

Allow me to leave you with the following verses that we studied in church this morning.  It made me think of Ellie: "But he said to me, 'My grace is sufficient for you, for my power is made perfect in weakness.' Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong." 2 Corinthians 12:9-10

April 24, 10am: We are back from Boston and had a great time! Thank you so much to Aunt Jan & Uncle Craig and Grandma Kate for watching the kids while we were gone. Here is Ellie and Lexie with their cousins Emily, Jamie, and Katie. Katie had prom this weekend and the girls loved helping her get ready!

Aunt Jan and Grandma Kate did a great job of putting a little weight on Ellie! They took wonderful care of her and she is doing so good right now. She has this week off of chemo and heads back next week. When she has time off and is able to gain strength, it helps her so much. She is feeling wonderful and running all over the place. She has tons of energy!

Thanks also to everyone who cheered Tom on during the Boston Marathon. He had a great time running it. He didn't finish with the time he had hoped (but beat last year's time by 1 minute!), but he wasn't able to train as much as he had hoped to this winter with our many doctor's appointments and travels with Ellie. For the amount he trained, he was happy with the result. He was just excited to be a part of it! The Boston Marathon is held on Patriot's Day, which is a state holiday in Massachusetts. Tons of people come out and line the course. The crowd support was amazing. Tom and I had a great time in Boston and it was so nice to get away a little bit. Last year, we took the kids with us to Boston and did all of the tourist attractions. This year, Tom and I went alone and had a more laid back trip and had a wonderful time together.

We are feeling so blessed right now. Ellie is improving every day. We are extremely grateful and appreciative. Thanks to all of you who continue to pray for us and Ellie. We are blessed by you!!

Today we thank God for the calmness and peace we feel with Ellie's cancer. We see such improvement in her and we know He is beginning to restore her.

"He makes me lie down in green pastures; he leads me beside still waters. He restores my soul." Psalm 23: 2-3

April 17, 9pm: All is going really good. Ellie is not feeling sick at all and is eating like crazy! She seems to be getting stronger and continues to crack us up with her 3-year-old wisdom.

Here is a picture of Mitchell & Lexie. They are holding trophies they received from an organization called Super Sibs. Super Sibs focuses on the siblings of cancer patients. They send the kids books, small gifts... this week, it was the trophies that have their names on them and say, "For your strength, courage and love; you are a super sib!" Of course, cancer doesn't only affect the patient, but it affects the whole family and I am so thankful for this organization that makes the siblings feel special.

I am also adding a few photos of Ellie. She is modeling a shirt that Tom will wear on Monday when he runs in the Boston Marathon. He will be running in honor of Ellie. The back of the shirt says, "I'm running for Ellie!" and the website address. The front also has the website along with "Go Tom!" In his previous marathons (this will be his 6th), he has found that if you have your name on the front of your shirt, the spectators will yell for you. It really gives him the encouragement he needs to complete the race!

If any of you want to follow Tom's progress in the race on Monday, you can log onto www.bostonmarathon.org. That website will give you updates on where he is at in the race. You will need his bib number: 8689. The race starts at 10:00am EST.

Thank you so much for all of your continued support. We don't know what we would do without you!! We feel your prayers. We are immensely blessed.

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

April 15, 10pm: Ellie is doing great. She is feeling wonderful. She has recovered from chemo last week and we don't have a chemo treatment this week. We are excited that she has this break. She is getting stronger and stronger!

I thought you'd like this picture of Ellie eating breakfast this morning. This is how her hair looks in the morning. Her remaining hair is very wirey and coarse. It sticks straight up when she awakes. Ellie thought this picture was very funny!

We are so thankful that Ellie is doing good. We are blessed beyond belief. What a true joy to watch her regain her strength and recover from her treatments. Thank you so much to all of you who pray for her. We have seen so many miralces over the course of this journey and we are truly uplifted by all of you. God holds Ellie in His hand and hears our prayers. Thank you!!

I will leave you with a picture of Ellie from this weekend. She had a chance to swim and she loved it. She was full of joy! it was so fun to see her being "normal" again.

Thank you for blessing us.

"God is able to provide you with every blessing in abundance, so that by always having enough of everything, you may share abundantly in every good work." 2 Corinthians 9:8

April 11, 11pm: Ellie is doing really pretty good. We had a rough day on Wednesday (her day after chemo). She threw up quite a bit and was nauseous. Yesterday and today she is much better. She has been stumbling and falling a little bit too. They told us that was a common side effect of chemo which we hadn't seen up until this week. We are only seeing this side effect a little bit.

She may not be 100% physically, but her spirit is great! She has told me knock-knock jokes all day today. She makes the jokes up herself and they make absolutely no sense, but she will laugh and laugh after she tells me one. She is in a great mood and we are so thankful for that!

I will leave you with Ellie's prayer from tonight: "Dear Jesus, thank you for everything you give us and thank you for keeping us healfy. That's all I got to say. Amen"

April 8, 8pm: We had a very long, but good day. Ellie had many tests and treatments and it really wore her out, but all of the news we received was good news! Here is Ellie as we arrived at Children's Hospital this morning. She is throwing coins into the wishing pond.

Ellie started off with a quick check-up and she gained over a pound! We were very excited. It's been awhile since she gained any weight. The 2 weeks off of chemo really helped her get her appetite back.

Ellie then was sent to get a chest x-ray and an abdominal ultrasound. Here she is getting ready for the ultrasound. Both of these tests came back good. They did not see any new nodules or anything that looked suspicious. They did say that her remaining kidney is now the size of a 6-year-old's. It has grown because it is doing all of the work, but they said that is normal.

After her tests, Ellie was given some fluids by IV and then given 2 chemo drugs. She finished up with more fluids. Her dosages on the chemo drugs increased a little bit so we will watch her closely. She has gotten her anti-nausea medicine several times today and seems to be doing good tonight.

Ellie did receive a fun surprise today. The hospital had a special Easter basket for her. A family had brought in 80 Easter baskets for the kids at Children's Hospital. They brought them to honor their daughter who had also battled Wilm's Tumor. Although their daughter is now in heaven, family and friends got together and made the baskets in her honor. They had one basket that they asked specifically be given to Ellie. We don't know this family, but they had heard our story and knew that our daugthers faced the same struggle. We were so touched by their sweet gesture. Thank you to Haley Mathis' family and friends. You are blessing others with your website and your Easter baskets. What a great tribute to Haley. Thank you. Here is Ellie with her basket.

Thank you to all of you who left a comment on the website today or texted me. It gives me such a sense of peace to be at the hospital and be able to read your affirming words. And they always seem to come at just the right time. Even though I have peace during this journey, it can still be scary. Especially when you are at the hospital and they are doing so many tests and procedures to your 3-year-old. Thank you for holding us up with your kind words and prayers.

We are so thankful to the Lord for Ellie's good test results today and for her continued improvements. We praise Him!!

"Praise the Lord, O my soul; all my inmost being, praise His holy name. Praise the Lord, O my soul, and forget not all His benefits - who forgives all your sins and heals all your diseases." Psalm 103:1-3

April 5, 6pm: I know this doesn't make for a very exciting website, but I really have nothing to report. Ellie is doing great. She continues to get stronger and is feeling really good. These two weeks off of chemo have been heaven. It's been nice to give her little body a break from treatments and allow her to get her strength back.

As for upcoming treatments, we go to Omaha on Tuesday. Ellie will get 2 chemo drugs. She will also get a chest x-ray and an abdominal ultrasound. They want to make sure her treatments are working and that we don't have any new nodules or spots. Of course, we are prayerful that she doesn't have anything that looks suspicious.

Allow me to explain the picture I have included today. Ellie saw me updating this site and asked me what I was doing. I told her that I was telling our friends how she was doing. She said, "You should tell them that I know how to write my name!" She grabbed her Doodle Pad, wrote her name (sort of) and asked me to take her picture. So here is Ellie with her name.

We are incredibly thankful that Ellie is doing so good. We are abundantly blessed. God has been so faithful to us.

"I have loved you with an everlasting love. Therefore, I have continued my faithfulness to you." Jeremiah 31:3

April 2, 11:30am: Welcome to April and month 4 of our journey. We are excited to start a new phase in Ellie's treatments. She will now have 2 weeks off between chemo treatments. We are thrilled that she is getting bigger breaks between treatments because when she was going every week, she didn't get the chance to fully get her strength back before going in for another treatment. She had last week off and also has this week off. She is doing great. She has tons of energy and is in good spirits. She does have some nausea in the mornings, but we give her the anti-nausea medicine and then she is fine for the rest of the day.

Here is a picture of Ellie today. As you can see, she still has some hair. The pictures make her look like she has a lot more hair than she truly does. She is pretty much bald in the back and has some wisps on the top and front. I am not sure if she will completely lose her hair or not. They told us she would be totally bald by week 6 of chemo and we are now on week 12. She may not lose it all. Ellie did start with tons of hair. In fact, she was born with a wig. People would stop me when she was a baby and comment on her hair. So perhaps she will keep a few wisps here and there. She and Lexie have fun making silly hair-dos with what is left of Ellie's hair. Ellie laughs and laughs when they do that.

We are so very blessed that Ellie is doing good. We are beyond thankful and grateful. It is truly a miracle and completely amazing. God is so good!! We praise and worship Him. And we thank you. You have supported us through diagnosis, surgery, radiation, and, now chemo. Thank you!!

Tom wanted me to share this verse today: "I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world." John 16:33