Ellie Grace Volk

Saturday, 8am: Radiation Celebration!  We are done with radiation!  Our appointment yesterday went great.  Radiation went quickly and, afterwards, the nurses had a little party for Ellie.  Here she is with some of them:

They gave her some gifts and cards.  They all were so good with Ellie and they said they would miss her.

After our appointment, we went out for a Radiation Celebration lunch.  Here we are with Tom's sister, Sue, who brought Ellie a "Way to Go Ellie!" cookie.    

We are so excited to have this phase of our journey behind us.  Ellie handled radiation very well and we are now going to put our full strength into our chemo treatments.  

Thank you so much for the prayers, thoughts and kind words during our journey so far.  You all have comforted us so much.  Tom wanted me to share this Bible verse with you:

"Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God." 2 Corinthians 1:3-4  

That is our prayer, that you all have been comforted during this process as you reach out to comfort us.  You truly give us strength and we are so grateful for you.

We wish you an incredible weekend and we will update soon! 

Thursday, Jan. 24th, 2pm: We just got back from radiation and it went well again.  Ellie laid still and it was over quickly.  One nurse told me that Ellie is the youngest patient they have had that they didn't have to put under anesthesia to administer radiation.  I am so thankful we have not had to put her under each time!

Tom and I have been overwhelmed by the amazing gestures we receive each and every day.  If I told you about all of them, this journal would be a mile long!  But I did want to share a gift we received yesterday.  Kim Marxhausen was my two older kids' kindergarten teacher at Faith Elementary.  Her current class of kindergarteners sent Ellie a sweet, soft hat and blanket.  The blanket is embroidered with, "May Your unfailing love rest upon Ellie, O LORD, even as we put our hope in You. Psalm 33:22". Here is Ellie with the hat on and the blanket around her and below is part of the note that accompanied the gift: 

"We made this quilt and hat for you as a way of reminding you that we blanket you with our prayers and know that God blankets you in His love and care.

Do you see the buttons on the quilt and hat?  Each one is a different person, big or small, who is praying for you.

Find the biggest button: that is your Daddy.

Find the prettiest button: that is your Mommy.

Find two shiny buttons: they are Mitchell and Lexie.

Find a button that looks like a star: this is to remind you that God's angels watch over you from heaven.

Find a button that looks like a flower: this reminds you of the new life that God gave you in your baptism.

Find a smooth button: this button is the nurses and doctors who work hard to make you healthy.

Find a button that looks like a wheel: this button is the machines and medicines that can sometimes be scary but are tools God is using to make you healthy.

Find the most beautiful white button on the hat: this is you.  No matter what, you are beautiful to God, to your family, and to all of us who love you and pray for you."

Thank you so much to Mrs. Marxhausen and her class.  We treasure this gift! 

I will leave you with a sweet note I got from my friend Rachel last night.  Rachel's own daughter is battling health issues, and yet Rachel reached out to support me - amazing!  Rachel has had this little card on her mirror since her daughter's birth and now has passed it on to me.  It says, "Don't worry about tomorrow... God is already there!  'For I know the plans I have for you,' declares the Lord, 'plans to prosper you and not to harm you, plans to give you a hope and a future.'  Jeremiah 29:11"  Thank you, Rachel (and please join us in praying for her baby, Abigail).  We have radiation again tomorrow - our last one!! We will update then.  Make it a miracle-filled day! 

Wednesday, Jan. 23rd, 5pm: We had another "mountain top" day!  (thanks to my friend Jennifer for that phrase!).  I'm sure we will have valley days too, but God is blessing us with such wonderful days through this.  I just can't get over how well Ellie is doing with this process so far.  Today we had both chemo and radiation - back-to-back.  We started at chemo and the Omaha Children's Hospital is so great with kids and Ellie feels comfortable the minute we check in.  Here she is in the playhouse there making me some pizza with ketchup (yum!): 

She was great the entire time, but did cry through the actual administration of chemo.  It doesn't hurt, but she really doesn't like it. (understandable!!)  But right afterwards, she went out and played with Play-Doh.  

We then went to radiation.  She laid perfectly still and it was over quickly.  Here I am reading to her while she is in the radiation room.  I talk to her over a speaker system.  The monitors in front of me are of her in the radiation room.

The only side effect she is having is a slight burn from the radiation.  It's like a sunburn on her tummy.  It doesn't seem to hurt her, but it does itch.  She didn't sick today and was in a great mood.

Afterwards, we went out for lunch and Ellie said to me, out of the blue, "Mommy, I'm sorry I was sad today."  She was talking about when she cried during chemo.  We had just been talking about how proud we were of her for enduring both chemo and radiation.  But she felt bad that she had cried.  It broke my heart!  I don't want her to feel like she has to be so tough.

Your comments today have been incredible.  Thank you!!  We truly feel your prayers.  The Lord is so good to bring us all together.  Thank you for your support! 

We have radiation again tomorrow and I'll let you know how it goes.  Much love to you!! 

Tuesday, Jan. 22nd, 8pm: Today was wonderful.  Ellie was in a great mood as we traveled to Omaha for her radiation.  Here she is as we arrived at the hospital:

Ellie does radiation at an "adult" hospital vs. the children's hospital where she receives chemo.  Ellie is usually the youngest person in the waiting room by about 50 years.  Today she was entertaining the room by singing songs.  Then, when her name was called, she just marched right down the hallway to radiation and went into the room by herself.  The waiting room got quite a kick out of that.

The nurses began their usual peptalk: "Lie still.  Don't move at all. It won't hurt..."  Ellie interrupted them and said, "Let's just do it!"  I guess she knows the routine. She laid very still and radiation was done before we knew it!  She was also in a great mood afterwards and didn't get sick at all (praise the Lord for anti-nausea medicine!)

This entire process really isn't fazing her. I know we still have a long road ahead of us, but for now, I am so thankful that Ellie is handling everything so well. 

Tomorrow we have both chemo and radiation, so it will be a big day for her.  We'll update when we get home.  As always, thanks so much for your prayers and your incredible comments. 

I'll leave you today with a few lines from a paper our 12-year-old daughter, Lexie, wrote about her sister.  After talking about Ellie's battle with cancer, Lexie ended her paper by saying, "God has been so gracious and I know that He will put His awesome (that word is underlined with a glitter pen) healing hand upon Ellie.  He will provide!"  So true, Lexie, so true! 

Monday, Jan. 21st, 4pm:  We have had a great day!  Our radiation appointment went smoothly.  It seemed to go very quickly.   They lined her up for her radiation, took a few x-rays, and then administered the radiation.  I read her Dora books while she was on the table and she just laid there and listened to my voice over the speaker system.  She didn't move at all and that made it go quickly.  Here is Ellie as we first got into radiation and they were lining her up:

We had given Ellie anti-nausea medicine before we left home and it really seemed to work. She didn't get sick at all.  In fact, she had a big appetite afterwards.

After our radiation appointment, we went to get Ellie's hair cut.  We decided that it might be too traumatic  for her to have her very long hair falling out when she loses her hair.   We felt that if she had short hair falling out, it might not be as difficult for her.  We also wanted to donate her hair to "Locks of Love".  Some good should come from her hair falling out! 

So here are some pictures of Ellie getting her FIRST haircut:

This is when Ellie first sat down and she wasn't too sure she wanted to go through with it.

 Below is Ellie right after her ponytail was cut off.  That's what we will donate.  She didn't want to hold up the ponytail for me to take a picture of it, but you can see it laying on her smock: 

Here is Ellie after the hair cut was done.  She ended up loving it!  

 Thanks to all of you who have inquired about the "Ellie Grace Prayer Circle" bracelet.  We are so excited to have a visual reminder to pray throughout the day.  We also love the symbolism of the prayer circle that Ellie has created among all of us.  I cannot believe the way her diagnosis has brought so many of us together.  This community of believers coming together to pray.  It is amazing and wonderful!  Our God is so awesome to use this situation to unite us. 

Thanks for your continued prayers.  We are so blessed by you!!   

Saturday, Jan. 19th, 6pm: We have some very dear friends, Dan & Annette, who have created an "Ellie Grace Prayer Circle" bracelet.  They wanted everyone to have a visual reminder to continue to pray for Ellie (and others!) during these coming months.   

If you are interested in obtaining one, you can click on the link on the left-hand side of the screen.  All of the details are there.  Our sincere thanks to them!  They are a blessing to us.  We feel like we continue to get one blessing after another.

"From the fullness of his grace, we have all received one blessing after another." John 1:16 

Friday, Jan. 18th, 5pm: No cute pictures today.  It wasn't a very "cute" day.  We started raditation and it was a bit rough.  For radiation, Ellie had to lay perfectly still on a metal bed.  They used lasers to line up exactly where they wanted to use radiation.  They did several x-rays and when they had it pinpointed as to where they wanted to use radiation, they would mark her with a Sharpie.  So, in addition to her scars, bruises, and band-aids, she now has black "X"s all over her tiny body.  When they had it all lined up, Ellie was instructed that she couldn't move at all.  We all had to leave the room and watch her on a video screen.  She looked so little in that big room with the large machines.  They had a speaker system in the room and I was able to talk to her during the radiation.  I told her all about a trip we are going to take this summer when this is all done.  She was a great patient and didn't move a muscle.  She just listened to my voice.  A few times she said, "Mommy, I don't want to do this!"  But she continued to lay still and do what the doctors asked.

After radiation, Ellie did get nauseous.  She has thrown up several times since we left.  They said that is a common side effect when radiation is given to the abdomen.  We have medicine we are going to give her before radiation on Monday and, hopefully, she won't get sick again. 

The good news we got today is that Ellie is going to need 6 radiation appointments instead of the 20 they had originally told us.  Praise the Lord!  I cannot imagine putting her through this 20 times! We will have radiation every day next week and then we are done with radiation.

We are now looking forward to a relaxing weekend getting our baby strong and feeling good again.  As always, thank you for your support and prayers.  I am able to access the internet on my phone and look at your comments often - especially when it is difficult.

I know there are many children - and adults - facing much larger problems than we have.  I truly feel blessed with the challenges we are facing.   I believe strongly that Ellie will survive this and come out stronger than ever.  There are just going to be some days ahead that aren't much fun.  But I know things could be so much worse.  We are thankful for all we have been given.  We know that, with God's help, we can get through this.  And we look for the blessings every day!  Here is the blessing I noticed today: we, as a family, are spending a lot more time together.  Before Ellie's diagnosis, we ran in 5 different directions.  Now we have circled the wagons and are coming together to help her through this.  Something like this makes you really appreciate spending time together and enjoying each other.  And, of course, we turn to the peace, comfort and strength that can only be found in our Lord.  He has given us many miracles and we are thankful!! 

Thursday, Jan. 17th, 8pm: We had photos taken of Ellie today because we wanted to capture this moment in time before any hair loss begins.  Thank you to Erica and Images for a Liftime!  Here is Ellie with Erica:

We head to Omaha in the morning to begin radiation.  We will update when we return home.  Thanks for your continued prayers and support!   

Tuesday, Jan. 15th, 7pm: We went to Omaha to start radiation today, but didn't actually have radiation.  Today they took x-rays and scans to find out exactly where they are going to give her radiation.  She had to lay perfectly still as they took picture after picture.  Here she is when we first went in and saw the radiation machine (notice how happy she looks!): 

She was very brave and laid still the entire time.  I was able to talk to her through a speaker system and reassured her the whole time.  

They have 8 scientists who will now study Ellie's pictures and decide exactly where radiation will be given.  Their goal is to kill the bad cells and not damage the good cells.  She will actually start radiation on Friday.

Here is a picture of Ellie in the waiting room showing me a picture she had drawn:

The funny thing about this picture is that Ellie first drew herself bald.  Then she said, "Wait a minute!  I forgot to draw hair.  I would look so silly without hair!"  She has no idea that very soon she will not have any hair!  And I don't think she will look silly.  She will be fine.  We will get very creative with hats and scarves!

The final picture I will share with you is of Ellie and Tom at lunch after radiation.  They are saying, "Cheers!" to Ellie being such a big girl at her appointment. 

And "Cheers!" to you!  Thank you so much for your support and encouragement.  You are all such a blessing to us!  We are so thankful to have you walk this journey with us.   When things get tough, I close my eyes and think of all of you praying for our little girl.  It truly gives me strength.  We can feel your prayers.  Our Lord is so good to bring us all together.  Thank you!!

Monday, Jan. 14th, midnight: What a day!  We started chemo today and it was quite an experience.  Tom and I have tried to be upbeat and positive during this process, but to walk into the oncology department at the hospital and see all of the kids with their beautiful bald heads, hooked up to IVs - it was a jolt of reality.  We know that is in our future and it was a bit overwhelming.  We sat down with several doctors and nurses who needed to tell us of the possible side effects and risks of chemo.  They also explained the entire process and what Ellie was going to go through.  It was a sobering experience.  I have to admit that I was a bit shaken up.

Here is the bottom line: Ellie started on 2 chemo drugs today.  Drug #3 will be introduced in 4 weeks.  She will get chemo once a week for 25 weeks.  They also want to start radiation right away.  We start that on Wednesday and she will have radiation 5 days a week for 4 weeks.  We will need to travel to Omaha for that too.  This first month will be when Ellie will be the weakest - when she is getting both chemo and radiation.  It's a lot for a 25 pound body to handle!

Ellie was a true trooper today!  Let me share some pictures with you: 

Here she is meeting the nurses:

Mitchell and Lexie didn't have school today and were able to join us:

 Ellie was excited to hand out some of the Prayer Bears.  Here is a couple of the kids she gave them to: 

  Here is Ellie waiting in the doctor's office:  

Even though today was a bit daunting, we know that God was with us every step.  I know He gave us the strength we needed.  During these next few months, we will only be given as much as we can handle.  We need to remember to count our blessings: Ellie is still here with us; we are growing stronger as a family; our faith is growing; our friendships have gotten deeper; the doctors and nurses at the Omaha Children's Hospital are the best we could ask for; and we have YOU!  You all give us more strength than you could possibly know.  We thank you for your support, prayers and encouragement.

We praise the Lord for all we've been given during this journey.  It has changed us forever.  We are blessed!

Let me ask a special favor of you: when you say a prayer for Ellie, please include all children facing cancer.  After meeting a handful of them today, I am amazed by their courage.

I'll leave you with a great verse that my friend Laura sent me today: "Be joyful in hope, patient in affliction, faithful in prayer."  Romans 12:12