What's Next..

Sorry for the delay in updating - we have had internet trouble.
This will be a very long post, we hope you will keep reading.

Tuesday's appointments were definitely more mentally draining than Monday's.
The praise from Tuesday was that all medical test results were good and Elena's heart, lungs, kidneys, and liver are all functioning within normal limits.
The hardest part was how overwhelming it is to hear what short term side effects will happen to Elena as a result of high dose chemo and total body radiation. It is just as overwhelming to hear the list of long term side effects that can happen.  While these lists are long and scary, we have to choose to go forward with a bone marrow transplant in hopes of a total cure from cancer for Elena. 


Whether Elena's next bone marrow test is positive or negative for leukemia, we do have a plan to move ahead with a bone marrow transplant.


Just last week, Egleston received approval for a new local research study. This study is for children who are MRD positive heading into transplant. Elena would be the first child on this study, but not the first child to receive the new drug used in the study.  This drug is not a cancer killing drug. It is a "mobilizing agent" designed to move the cancer that is resistant and "stuck". We know that Elena's is. The drug will move the cancer out of the nooks and crannies of the bone marrow so that it can be killed by the high dose chemo and radiation that Elena will receive in the days immediately before her transplant.  This is currently the best option we have.  We are thankful this study opened and we are thankful that we can remain in Atlanta for Elena's treatment!


Here is a time line of the plan:

July 9th

sign BMT consent forms

Elena's bone marrow aspirate

BMT nurse visit

radiation simulation

July 10th or 11th 

find out the results of Elena's bone marrow aspirate

July 16th 

Elena admitted for bone marrow transplant  (will be in the hospital for 4-6 weeks straight)

July 25th 

Transplant day!

If God answers our continued prayers for Elena's bone marrow test to be MRD negative (ZERO leukemia cells detectable), then Elena will have a "standard" bone marrow transplant at Egleston not on the new study. The time line would remain the same.

The only thing that would halt the time line is if Elena's test results show an increase in disease (leukemia) in her body. Please pray that this will NOT happen.

Needless to say, Elena has felt a little overwhelmed the last couple of days.  She is hearing everyone say that her bone marrow transplant (BMT) will be her hardest battle yet. She has already battled long and hard - 29 months of chemo (April 2009 - August 2011), news of a relapse (February 2012), more chemo, a total of 49 days in the hospital, hearing a BMT was in her future, and constant changes in plans relating to when her transplant would happen. She is weary of having to prepare herself for more. We all are.

She has definitely had less than ideal summer plans.  While her friends are planning fun activities and swimming, Elena is trying to keep doctor’s appointments straight, considering what bone marrow transplant will be like, fearing total body radiation, and wondering when she will ever be able to start school.

Elena's transplant and our time apart is getting very close.  We are aware that the road ahead will be very long and very difficult. In the coming days, we will share more details about BMT with you.  Thoughts of what is still to come aren’t far from any of our minds, but we are going to try to push those thoughts aside and focus on enjoying right now and these eleven days before admission into the hospital.

We ask you to please pray for God to renew and restore us.  We ask that He will give us lots of joy and fun before we go in for her BMT.  We ask Him to help us focus on today and not think through all of BMT.  We don’t want to miss any fun before being admitted because of dread.  We ask for God’s mercy on Elena during BMT.  Ultimately, we pray that all of this work and effort will pay off in a cure for her.

In Him,
The Tates

“You keep him in perfect peace whose mind is stayed on you, because he trusts in you.” Isaiah 26:3

New Places, New Faces

Today was a really LONG day, but not a bad one.
We left the house around 6:45 this morning and after picking up Liv, we were home by 4:30 this afternoon. We came home very tired, but not overwhelmed. 

All test procedures today went well and we hope to hear those results soon. Today's meetings were really more "get to know you" type meetings. Not really anything new, just new faces asking the questions. 

We think tomorrow will be much different. We will hear the specifics about the chemo and radiation procedures that will be used in preparation for Elena's bone marrow transplant. At 9:00 am, we will meet with the bone marrow transplant team doctor. This meeting will last about 2 hours. Then, at 11:00 am, we will meet with the radiation oncologist for our radiation consult meeting.

In preparation for tomorrow, please pray:
- for a good night's sleep for all of us
- for mental and physical stamina for each of us
- 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

Please also keep our friend, Sarah, and her family in your prayers.
She received her stem cell transplant on June 28th.
Seeing Sarah and her mom Heather today was definitely the BEST part of our day!
They are a constant ray of sunshine to us and an amazing testimony of staying strong in your faith as you weather life's storms!

This evening, thanks to a friend and neighbor, we will be enjoying a delicious homecooked dinner soon. 

Thank you for continuing to pray and be by our side!
In Him,
The Tates

"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

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