Next Steps - Prayer Requests

We found out this week that we are going to go to Egleston to begin pre-transplant evaluations and meetings.
This is the basically the same schedule that was supposed to happen back on June 12th. Please pray for our family.

Monday, July 2nd
This day is filled with medical evaluations and meetings.
We are scheduled to arrive at 7:45 am.
Elena will have kidney, heart, and lung function tests.
We will meet with the research nurse, child life specialist, psychologist, social worker, and financial coordinator.
The final appointment is scheduled to begin at 2:00 pm.
It will be a long day, both physically and emotionally.

Please pray:
- for Elena not to be anxious about the day
- for Elena not to be overwhelmed by any information she hears
- for mental and physical stamina for each of us
- for all of Elena's medical evaluations to have good results
- for Liv to enjoy her day with friends and not worry about what we are doing

Tuesday, July 3rd
On this day, we are scheduled to meet with the bone marrow transplant team doctor at 9:00 am. It is a consent meeting. We will hear the specifics about the chemo and radiation procedures that will be used in preparation for Elena's bone marrow transplant. Elena will be present for most of this meeting. We have been told that it will last about two hours. Then at 11:00 am, we will meet with the radiation oncologist for our radiation consult meeting.

Please pray:
- for Elena not to be overwhelmed by any information she hears
- for us to have the wisdom to determine what is appropriate for Elena to know at this time (long term side effects of treatment will be discussed)
- for God to direct Elena's doctors as they make decisions about her care
- for God to give us and the doctors His perfect wisdom about what is right for Elena

In Him,
The Tates

"Trust in Him at all times, O people, pour out your hearts to Him, for God is our refuge."
Psalm 62:8

Fun in the Summer

With the help of the Hankinson and Lindstedt familes,

we enjoyed two of the things on our Summer Fun List!

We went horseback riding and had homemade ice cream!

We first met Cori and Phil in July 2009.  They were serving on a family retreat we attended.  They were our family partners.  They took care of us for one fabulous week in Florida.  The program was with Lighthouse Family Retreat - a nonprofit organization that provides families with kids with cancer an amazing getaway to the beach - a week to get away, forget, share, learn and grow as a family in the middle of the chaos cancer brings.  We formed a close bond that week. Cori and Phil are like family to us and have brought us so much joy, laughter, and love over the past three years. We have also come to know and love their own families over the years as well. A friendship that came to be because we had cancer in our lives.
A blessing in this storm!

Cori is also a photographer and has taken family pictures for us every year. You have seen her work each year when you get our Christmas card.
If you need a photogragher for any reason, check out her site:
http://livinandlovinphotography.blogspot.com/

 

Here are some pictures from
our Lighthouse Family Retreat trip

July 2009:

June 2012
An Evening of Horseback Riding and Fun
 at The Lindstedt's

Cori and Elena

The girls and Cooper!

Liv helping get Brandy ready to ride

Elena helping Jean get Shiloh ready

 

Even Cooper went for a ride!

 

 

Heading back to the stables

Kisses from Santana

 

The girls and Jean

The girls and Phil and Cori

Once again in the middle of the storm,

we were given a day filled with love, laughter, and friends!

A get away - an escape - a day filled with memories!

Not too mention horse kisses and homemade strawberry ice cream!

In Him,

The Tates

"A friend loves at all times."  Proverbs 17:17



Fun and Healing

While we are so happy to be home, it hasn't been easy.

Elena continues to battle throat and mouth sores, nausea, and the pain associated with trying to eat and drink. The sores on her lips often bleed. As a result of all of these, sleeping has it's challenges as well.  It seems she gets her best sleep between 6 am and 11:30 am each day! Elena is able to eat a little each day. Her strength and perseverance continues to amaze us all.  She bangs on the bathroom counter each time she uses her "magic' mouthwash - it burns as it works to heal. She has to use it four times a day.

With the unexpected trouble during Elena's hospital stay and kind of always feeling like our lives are out of control, we haven't had a chance to tell you about our fun summer events. Thanks to our friends and family we had some great days! We are going to try to tell you about them in the coming days. 

We will start with last night. Aunt Rainey and our cousins, Ray, Wayne, and Caroline were in town.  Elena had been feeling badly all day, but quickly perked up during their visit.  We enjoyed dinner out together at one of Elena's favorite Italian resturants.  She ate some pasta and the inside of her fav rolls!  Aunt Rainey summed up the evening so well.  This is what she wrote in Elena's guest book. (Yes, Elena has a guest book for friends and family to sign whether they visit her in the hospital or at home!  Great idea and gift from her friend Sarah!)

"Sitting here after dinner hearing the joyous squeals of three precious girls catching fire flies and jumping on the trampoline . Who would guess that one of them is fighting for her life? The sounds of laughter and play tell a story of courage and strength and prove that Elena is going to beat this."  She went on to encourage us:  "The devil made a big mistake when he tried to challenge this family. Your love and devotion to one another will win out, not to mention all of your family, friends, and support of the community. We all know that it is God's work that will get this cancer thing done with and beaten."


Thank you to our family, friends, and others who we do not know, for continuing to pray for us and encourage us each and every day.  Thank you to Grandma Vickie for coming to help take care of Liv while Elena was in the hospital.  Thank you all for continuing to stand with us.

Enjoy these pics from last night!
Other summer fun stories to come.

In Him,
The Tates

"We wait in hope for the Lord; He is our help and our shield. In Him our hearts rejoice, for we trust in his holy name. May your unfailing love rest upon us, o Lord, even as we put our hope in you." Psalm 33:20-22

Home Sweet Home

We never get tired of coming home!
No matter what the day is like.
No matter what the week is like.
We never get tired of coming home!

This morning, Elena's levels were where they needed to be to come home. Praise God!
Please continue to pray for her. 
We came home with eight prescriptions to fill!
She is battling nausea and mouth sores.
Pray we will once again have peace in the waiting and find joy in every moment.

In Him,
The Tates

"Be joyful in hope, patient in affliction, faithful in prayer."  Romans 12:12

Getting Better

Elena had the best night last night!  Praise the Lord!
She experienced no pain episodes and no restlessness.

Today, we spent time talking to several doctors. Elena's leg xrays did not show any change from the xrays that were taken on May 1st.  They still report that Elena has osteopenia - a loss of bone mass as a result of long term steroid use and some kinds of chemo. The doctors think Elena's pain this week may have been caused by a combination of the methotrexate, anxiety, and the damage to her bones and nerves caused from prolonged treatment for her leukemia.

Elena's methotrexate levels continue to drop, but at a slightly lower rate compared to last time. Her fluid rate has been increased, in hopes that it will help flush the chemo drug out of her system more quickly. More labs will be drawn tonight.  We do not know if Elena will be going home tomorrow or not.

Please pray that Elena's levels will drop to the expected range so that we can go home.
Pray for Elena will not develop any mouth sores. Some were beginning to appear this evening.
Pray that Elena will be able to come off of the pain pump completely tomorrow.
Pray for God to calm our restless hearts and minds.


Please also pray for our friends, The Barrs.  Their daughter, Sarah, was admitted to Egleston yesterday for her upcoming stem cell transplant. They have been a constant source of support and inspiration to us.

You can follow their journey here:
www.journeywithsarah.wordpress.com

In Him,
The Tates

"Look to the Lord and His strength; seek His face always."
1 Chronicles 16:11

A Not So Terrible, Much More Bearable Day

Thank you for your prayers!
We will be going to bed tonight thanking God for hearing our prayers and for each of you who have said prayers on our behalf.

Compared to yesterday, today was much better.

Overnight, Elena only experienced one bad pain episode.  Today has been filled with finishing the 36 hours of chemo, talking to doctors, and having leg x-rays taken.  Elena has battled headaches, knee pain, mouth sores, nausea, and feeling tired and achy all over. We have however enjoyed a sun filled room, painting nails, meeting the new head pastor from our church, making shrinky dinks, visiting with a friend, and watching Little House on the Prairie.

As of tonight, we still do not have any answers to what exactly has been causing Elena's leg pain.  There are a few possible reasons, but nothing definite.  Right now, they are continuing to control her pain and monitor her methotrexate levels.

We are hoping that we will find out the results of the leg x-rays in the morning and be able to determine what is going on. 


Please join us in praying for:
-God to direct Elena's doctors as they try to determine what is causing her leg pain
-God to give us and the doctors His perfect wisdom about what to do for Elena
-God to give us the strength and perseverance we need
-us to have peace in the waiting
-Elena to be protected from any infections and fevers
-all of Elena's negative side effects to quickly and completely go away
-Elena's ph levels to drop at the expected rate so that we can go home by Saturday

In Him,
The Tates

“Surely I am with you always.” Matthew 28:20

A Terrible, Horrible, No Good, Very Bad Day

We need your prayers.
Last night, before ever going to sleep, Elena started to experience intense leg pain from her knees down.  It continued throughout the early morning hours.  Elena never slept. It was awful -tears streaming, fist clinching, grimacing pain.
After four doses of morphine, she was still in pain.  A pain pump was ordered. Elena was finally able to rest from about 3 - 6:30 this evening.

She is physically and emotionally exhausted. We all are.  A cause for the leg pain still has not been determined.

So, we sit here at Scottish Rite in the dark after a hellish night and day.
Watching your child scream in pain, crying out for help and calling your name for hour after hour is heart breaking!

We ask simply that you pray as you feel led.
We pray for answers, peace, and rest.

In Him,
The Tates

"Give all your worries and cares to God, for he cares about you." 1 Peter 5:7

Another Day - Another Stay

That's the blog title Elena came up with this morning at 9 am on the way to the clinic.
Today was another day - a new day and the beginning of another stay at the hospital.

Today has been a really long day!  Not quite sure why it took four hours to get Elena's blood chemistry back from the lab and to start her pre-chemo fluids? But that was how our time was spent at the clinic today.  By 2:30 this afternoon, Elena was in her room at the hospital.  After arriving at the hospital, we moved on to more waiting...waiting for Elena's ph levels to rise to the right number so that she could began this round of high dose chemo.  That took over seven hours! Elena finally reached the magic number at 10 pm.

This round will be the same as Memorial Day weekend. Thirty six hours of methotrexate.  Elena will finish this chemo treatment at 10 am on Thursday. During this time, she is not allowed to leave the Aflac wing.  She will not be able to go to the cafeteria  or outside. Once this treatment is complete, there will be more waiting.  This time, Elena's blood levels will be measured and monitored. She will need to "clear" the chemo from her blood system at the right rate and reach the right level before she will be allowed to go home.

Tonight, we ask you for your prayers. Elena has been experiencing all over body pain this evening. Please pray that it is nothing. 

Please also join us in praying:
- for Elena's body to be able to handle this chemo treatment
- for Elena to experience NO nausea, NO mouth sores,
  or any other negative side effects  
- for this round of chemo to kill ALL remaining leukemia cells
- for the coming days to be filled with as much joy,  sleep,
  and rest as possible

In Him,
The Tates

"He shall say: “Hear, Israel: Today you are going into battle against your enemies. Do not be fainthearted or afraid; do not panic or be terrified by them. For the Lord your God is the one who goes with you to fight for you against your enemies to give you victory. ”

Deuteronomy 20:3-4

Updates

Had we written a post on Tuesday it would have been filled with anger, rage, and little hope.  We were so aggravated that there is not a clear plan for Elena and that the options are getting narrower and narrower.
But, we can't forget the truth - - "Because of the Lord's great love we are not consumed, for His compassions never fail. They are new every morning, great is your faithfulness."   Lamentations 3:22-23

Wednesday, we had to focus on Liv.
We are so very happy to report that her scan was CLEAR!  There are NO signs of recurrent tumor!  Praise be to God!

We had prayed that the entire morning would go well.  That didn't happen.  Liv was poked three times before a vein was successfully found.  She was scared, anxious, and upset, lots of tears and fright and once again woke up very agitated and upset.  But, the ultimate prayer of clear results was answered.

Yesterday, a plan for Elena's next steps also came into focus.
Her doctor will be giving her another dose of the 36 hour Methotrexate in combination with one or two other drugs in hopes of reducing the leukemia even more.  She will be admitted into the hospital (Scottish Rite) on Tuesday, June 19th. He estimates her stay to be about the same as last time, five days. Back on Memorial Day weekend - she stayed from Thursday til Monday.

We will then wait until the first week in July to have another bone marrow test. Once again, depending on the results of that test, we will have more decisions to make.  Elena's doctor has shared some possible options with us, but if Elena still has any detectable leukemia cells in her body, the options have risks and the decision will not be easy to make. 

We hate that there is not a clear plan for Elena.
We hate that long term outcome seem less and less bright.

We do know that we want Elena to be completely healed from cancer.

So, we will be focusing only on what we do know and on enjoying every day of summer we can! 

In Him,
The Tates

"Be strong and courageous, do not be terrified, do not be discouraged, for the Lord your God will be with you wherever you go."  Joshua 1:9

Change of Plans - AGAIN!

We don't know if today's news can be described as another wave or a changing current...Dr. Lew called with Elena's test results.
They show her minimal residual disease (MRD) is .2%

What does this mean?
Elena still has a small (but real) amount of residual leukemia.
All planned transplant appointments have been postponed - AGAIN!

Ideally, her doctors would love her MRD to be undetectable entering a bone marrow transplant.  Survival rates are much higher if this is the case. However, her doctors are also unsure if another intensive round of chemo would get Elena to zero MRD.

Elena's doctors are looking at possible options.
Right now, they are recommending more chemo to keep the leukemia in check and to hopefully reduce the MRD further or God willing - make it undetectable!
 
The big question the doctors have is what intensity chemo they should give Elena.

So, here we are once again with little direction, no plan, and no scheduled appointments.

Please pray:
- for God to direct Elena's doctors as they try to determine what our next steps are
- for God to give us and the doctors His perfect wisdom about what is right for Elena
- for God to give us the strength, peace, and hope we need

Liv's MRI is still on Wednesday, June 13th.
Here are the specific prayers for Liv:
- for Liv to be calm before the test
- for Liv not to be anxious about getting the IV (she usually gets extremely upset and cries)
- for the sedation procedure to be safe and not harm Liv
- for Liv to come out of sedation calmly ( she usually wakes up very agitated and upset)
- for the MRI results to show NO signs of recurrent tumor

In Him,
The Tates

"The Lord gives strength to his people; the Lord blesses his people with peace."
Psalm 29:11

A Busy Week

We wish we could have set sail on Elena's Make-A-Wish trip today.  That's what we would rather be doing.  We wish our busy week ahead was filled with regular summer fun, but it's not.  Instead, our minds are focused on something else entirely.  Tonight, while laying down, Elena said she was thinking about "it" getting closer and closer.  When asked what was getting closer, she replied, "The one thing we are doing this summer."  She said she didn't like to say the word - - transplant.

We are trusting God that Elena's bone marrow test results will show NO evidence of leukemia cells and that this week's schedule will go on as planned. We should hear the results of the test tomorrow or Tuesday.

We want you to know the details about our upcoming week, so that you can pray over all of them.

Monday, June 11th
We will start the week with a fun afternoon at the Georgia Aquarium.  One of the things on Elena's "What I Want to Do Before My Transplant" list.

Tuesday, June 12th
This day is filled with medical evaluations and meetings at Egleston.
We are scheduled to arrive at 7:45 am.
Elena will have kidney, heart, and lung function tests.
We will meet with the child life specialist, psychologist, social worker, and financial coordinator.
The final appointment is scheduled to begin at 3:00 pm.
It will be a long day, both physically and emotionally.

Please pray:
- for Elena not to be anxious about the day
- for Elena not to be overwhelmed by any information she hears
- for mental and physical stamina for each of us
- for all of Elena's medical evaluations to have good results
- for Liv to enjoy her day with friends and not worry about what we are doing

Wednesday, June 13th
Liv will have her annual MRI at 8am
She will be sedated and receive contrast for this brain MRI.

Please pray:
- for Liv to be calm before the test
- for Liv not to be anxious about getting the IV  (she usually gets extremely upset and cries)
- for the sedation procedure to be safe and not harm Liv
- for Liv to come out of sedation calmly ( she usually wakes up very agitated and upset)
- for the MRI results to show NO signs of recurrent tumor

Thursday, June 14th
On this day, we are scheduled to meet with the bone marrow transplant team doctor at 9:30 am.  It is a consent meeting. We will hear the specifics about the chemo and radiation procedures that will be used in preparation for Elena's bone marrow transplant. Elena will be present for most of this meeting.  We have been told that it will last about two hours.

Please pray:
- for Elena not to be overwhelmed by any information she hears
- for us to have the wisdom to determine what is appropriate for Elena to know at this time (long term side effects of treatment will be discussed)
- for God to direct Elena's doctors as they make decisions about her care
- for God to give us and the doctors His perfect wisdom about what is right for Elena

Thursday evening
Our neighborhood swim team, the Morningview Manta Rays, will be holding a fundraiser for CURE in honor of Elena, Abby Boone, and Cole Carter. All of these children in our neighborhood either have had or do have leukemia.  Proceeds from the sale of orange t-shirts, wrist bands, cupcakes, cookies, raffle tickets, smoothies, orange nail painting, and many other things are going to support childhood cancer research. 

The event will take place during a swim meet. The fun begins at 6:00 pm at our neighborhood pool. We would love for you to join us if you can!

Friday, June 15th
There will be a Red Cross Blood Drive at our neighborhood club house in honor of Elena, Abby, and Cole.  The drive will run from 1:00-7:00, and you can log onto www.redcrossblood.org to schedule an appointment or contact Abby's mom, Kim, at kimboone123@gmail.com and she will make an appointment for you. Over the years, Elena has received 12 blood transfusions. Most recently, on May 10th. We would love to get 50+ units of blood this day!  It is truly a life saving gift!


Thanks for reading this really long post!
Please continue to pray for us to have the strength, peace, and hope we need to continue this fight.

In Him,
The Tates

"Be strong and courageous, do not be terrified, do not be discouraged, for the Lord your God will be with you wherever you go."  Joshua 1:9

Amazing!

We are home from our absolutely fabulous trip to the beach.
It can be described in many ways:
relaxing, restoring, carefree, restful, hot, fun filled....
truly a blessing.

It was all we hoped for and more!!
More fun - more relaxing - more than the four of us....

This is how the more than the four of us happened - when we were almost to the condo, we started saying, wouldn't it be great if our friends, the Vickers, could be here....then without really thinking we asked them if they wanted to come down and stay with us. They were already off on Friday - why not? Really? It's 9 o'clock at night! Seriously!?  Well, the Vickers didn't think, didn't plan, and didn't wonder. They packed their suitcases and were on their way to us less than 10 hours later!  Early the next morning, this is the text we received from Stacee:

"I had a crazy dream that y'all invited us to the beach and we packed the car and left!! We are in the car. I still can't believe it!!"

We couldn't either!  Talk about seize the day!  We are so not spontaneous, get up and go people!  We are so grateful that the Vickers didn't stop to think and question! 
They did what we try hard to do each day.  Enjoy THIS moment - enjoy THIS day - enjoy right now.  Too often, we miss it because we are thinking ahead to what might be.  Too often, we get pulled away by the fear, the what ifs, and the trouble and we lose sight of the hope, the joy, and the truth.

We are thankful that Robbie and Stacee continue to remind us to focus on what we know and what is real. We have said it before, the Vickers are a part of us. Over many years, our lives, our joys, and our sorrows have been woven together.

We are so very grateful to the friends who graciously loaned us their condo so that we could truly escape, to the Vickers for making this weekend extra special, and to God for giving us the peace and rest we so needed.

Now, home from the beach and back to reality.  Here are some updates.

Answered prayers:
Elena's mouth and throat sores went away quickly.
Elena stayed free from fevers and infections while we were out of town.
God has granted us peace, patience, and hope throughout most of our days.

What's coming up:
Elena's bone marrow test has been moved from tomorrow to Friday.

All of Elena's previously scheduled appointments at Egleston have been pushed back a week.  She is tentatively scheduled for a full day of evaluations on Tuesday, June 12.
This, of course, will depend on the results of Friday's bone marrow test.

Liv will have her annual brain MRI on Wednesday, June 13.

Please continue to pray:
-for Elena's bone marrow to show NO evidence of leukemia cells
-for Liv's MRI to show NO signs of recurrent tumor
-for God to give us the strength, peace, and hope we need
-for us to be accepting of God's plan and timing
-for us not to lose sight of the joy we can have right now
-for us not to be consumed by the questioning and wondering

Tonight we end this post with a prayer from a devotion by Samantha Reed:

"Dear Lord,
You are faithful. Please direct (our) thoughts and (our) steps. Take what doesn't belong—fear, doubt, unbelief—and replace them with hope, trust and joy as (we) focus on You instead of (our) circumstances. Thank You for working on (our) behalf.
In Jesus' Name,
Amen"