Important Prayer Request and Our Fabulous Days Before Transplant

**** Important prayer request ****
While working on this post, our case manager from Egleston called - Elena's repeat liver enzyme test from Wednesday  remained elevated. The test will be repeated when she is admitted on Monday. PLEASE PRAY that Elena's liver enzymes will go DOWN! They are close to four times higher than normal. IF they become higher than four times, Elena WILL NOT be able to participate in the transplant study! We have come too far to not be able to proceed as planned! PLEASE PRAY!

Now for the originally planned post:
Knowing Elena would be admitted on Monday, July 16th for her bone arrow transplant, we tried to plan "Five Fabulous Days" of fun for her.

Yesterday was "Make It" Day.  With help from a friend, Elena enjoyed this fabulous day.  At one point she even said it was the best day ever!!  You can't get any better than that!  Thank you to our friends, Tami and Casey, for making "Make It" Day so fabulous!

Here's Elena and Casey at lunch Thursday

Here are some pictures of what Elena made:

Beach in a Jar

A button "E" wall hanging

A paper flower picture

She also made:

a fort
a yummy yogurt sundae at Yogli Mogli
a list of things she needs for the hospital
and
dinner!

Today is Media/Technology Day.
Thanks to Elena's friends and family - she will be using gift cards to download whatever she wants from itunes and Amazon.  Her itouch, Kindle Fire and ipad will all be charged and ready to go!

We are grateful to family, friends, and Elena's teachers for these electronic gifts and gift cards that will help make the weeks away from home, stuck in a hospital room, a little more manageable!

Thank you for praying for these days to go by slowly! Thank God, they are!
Please continue to pray for peace and for our days to be filled will joy and laughter, not worry and dread.

In Him,
The Tates

"Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God.  And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus."
Philippians 4:6-7

More about Transplant

Elena will be admitted for her bone marrow transplant (BMT) in four days.  We wanted to share a little more about BMT with you. We also have a specific prayer request list to share.


Most importantly, we are already praying:

• that the BMT would be effective in defeating leukemia once and for all and bring complete healing to Elena
• that Elena would be protected from the possible long-term side effects of this treatment that would be harmful to her

The first request sums up why we are doing this form of treatment in the first place and what we hope to be the ultimate outcome.

When Elena gets to BMT, we will begin to refer to days by number of the day on the transplant timeline. The days before transplant are a part of the preparative or conditioning regimen. For Elena, there will be nine days before transplant. These days before transplant will be referred to as Days -9 through -1.

The day of transplant is called Day “0″.Then, we count up through Day +100.
During Elena's preparative regimen, she will receive both chemo and radiation. This is to kill any cancer cells in Elena's body and also to help prepare Elena's body to receive the new, healthy blood stem cells. Both the chemo and radiation will destroy Elena's own bone marrow cells so that they will not fight off or reject the new, healthy cells. By killing these cells, there will also be more room in the bone for the new cells.

At this time, Elena will receive two chemo drugs, the new "mobilizing" drug and a drug to protect her bladder all via her central line.  She will also receive total body irradiation (TBI) on Days -8 through -5. For four days, twice a day, Elena will be taken from Egleston over to Emory's Winship Cancer Institute.  Each session will last about 30 minutes, 15 minutes of radiation to the front of her body and 15 minutes to the back of her body.

The conditioning regimen will be very hard on Elena's mind and body. Possible problems may include: nausea, vomiting, mucositis, headaches, sunburn (radiation), jaw pain, dry mouth, and low blood counts.  Other more serious problems may include: veno-occlusive disease (VOD) of the liver, hemorrhagic cystitis of the bladder, and graft-versus-host disease (GVHD).


The road feels overwhelming. We hope that by sharing all of the details with you, you will have a better understanding of what lies ahead and will help us carry this burden.

Please pray for us to keep our focus on God moment by moment, day by day.
The Barr Family has reminded us that - He is faithful, He knows what we need before we ask, and He is able to do more than we can ask or imagine. We ask Him to direct our steps every day.

Below you will find a very specific prayer request list.

Our friends, the Barr's, wrote this list for their daughter and have graciously said that we can post it for both Elena and Sarah.
You can follow Sarah's journey through relapse and her stem cell transplant at:
www.journeywithsarah.wordpress.org

During transplant, please pray that ultimately, God will allow this treatment to be effective in beating Elena’s cancer! 
Specific things we ask you to join us in praying for are:

• That God will protect Elena from the potential long-term side effects she could face from treatment. (such as damage to the brain, heart, liver, bladder, kidneys, thyroid and other glands, and eyes (cataracts), risk of other secondary cancers, and more) 
• That Elena will not develop any complications that will lead to time in ICU or other problems (such as VOD or pneumonia).
• That Elena won’t be allergic to anything she is given
• That God will help Elena deal with having to stay on the BMT hall and not being outside for 4-6 weeks  
• That God will help all of us deal with the time apart well, and that it will pass quickly
• That God will keep us from getting sick during this time
• That God will use us to share His love with others we meet on the hall and in the hospital, to encourage them and/or to point them to the source of our hope – Jesus
• That God will protect Olivia during this time
• That God will help Elena need as few transfusions as possible and let her counts rebound as quickly as they can
• That God will guide all our nurses and doctors to take great care of Elena
• That God will help us get the rest we need throughout this time

Thank you for reading this very long post!

Thank you Lord for placing the Barr family in our lives.

Thank you for praying!


In Him,
The Tates

Thursday Update

Yesterday was another long and tiring day.
It didn't start off very well, but thankfully ended happily!

While driving to Scottish Rite, we received news of Elena's bone marrow test results. It was still positive for leukemia cells.  So, Elena will be the first patient on the new MRD positive study at Egleston. It will use a drug to "mobilize" the cancer that is resistant and "stuck". 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. We will share more details about transplant later.

After we arrived at Scottish Rite for Elena's test, there were issues that delayed the procedure for an hour and a half. We did our best to keep our cool and find joy in the craziness of it all. Finally at noon, Elena had a fluoroscopy.

A new word for us, fluoroscopy.  It is a type of medical imaging that shows a continuous x-ray image on a monitor. It was like an x-ray movie. Imagine an x-ray coming to life -breathing lungs, a beating heart, and moving bones on one x-ray image! Pretty cool! The doctor injected contrast into Elena's line while watching it all on the monitor. He was wonderful! He clearly explained everything he was doing and what he was looking for.  After several minutes, he determined that there was a small clot at the end of the line. It dissipated and you could then see the line working clearly. We immediately thanked God that the procedure identified and solved the problem.

Then, over to the clinic we went for labs.  It took a while, but soon after labs were drawn, we were off for a late lunch.  We were happy to finally begin our "Five Fabulous Days"!! Today was "Shopping Day".  We went shopping for comfy hospital clothes, fun hospital room decorations, and other more practical items.  Not exactly your dream shopping trip, but it's where we are right now.  No matter what we think of it, no matter how much we wish it was different, this is our life right now.

Thank you for your prayers! Thank you for letting us know you care!

We love this prayer from a friend -
Praying for the next days to go by slowly!

In Him,
The Tates

"With God we will gain the victory, and He will trample down our enemies (leukemia)."
Psalm 60:12

Prayers Needed for Wednesday

Yesterday, we posted about the nurses having trouble with Elena's line.  This afternoon, we found out that the BMT team wants Elena to have a procedure tomorrow to figure out what is going on with her central line. Not exactly what we want to be doing during our "Five Fabulous Days" before Elena goes into the hospital on the 16th!!

We know we need to figure out what is causing Elena's line to be blocked, but hearing the unexpected news that you have to go to the hospital AGAIN for ANOTHER medical procedure is NO FUN!

The plan is to sign in at Scottish Rite tomorrow at 10 am - once registered, we will go to Radiology.  They will inject a nuclear medicine into her line and then take pictures of her chest to see what is going on. After that, we will have to go to the clinic for lab work.  Yes, more lab work.  If Elena's line is not working, they will have to draw labs from her hand or arm again.

PLEASE PRAY!

Pray that the time at the hospital and clinic will be quick - NO unnecessary waiting.
Pray that the scheduled procedure will clearly show what the problem is.
Pray that the problem can be easily solved.
Pray that the problem will not need any surgical intervention.
Pray that the line will NOT need to be replaced.
Pray that we will find joy and that happiness will fill the day - despite where we are and what we are doing.
Pray that these unexpected turns will not cause us too much anxiety or stress.
Pray that we can completely trust God with all things.

Thank you for praying!

In Him,
The Tates

"I will lead the blind by ways they have not known, along unfamiliar  paths... I will turn the darkness into light before them and make the rough places smooth. These are the things I will do; I will not forsake them."
Isaiah  42:16

Monday Update

Today was another long and exhausting day at Egleston.

After beginning our early morning in Atlanta traffic, we met with the oncology doctor who wrote the research study Elena may be eligible for. He was very nice and answered all of our questions regarding the study and transplant in general.  We then signed four different consent forms, including the one for Elena to receive her bone marrow transplant at Egleston.

After signing the consent forms, the first official part of this journey to transplant began.  Elena was to have labs drawn from her line and have a bone marrow aspirate performed to determine the current amount of leukemia cells in her bone marrow.  However, her line did not have any blood return.  It could be flushed, pushing fluid in, but was not allowing any fluid (blood) to be drawn out.  So, the nurse received permission from the doctor to use a "clot buster" medicine to see if that would free up the line.  After sitting in the line for 30 minutes, it did not work.  Elena ended up having to have her labs drawn from her arm.  Not fun having a line that isn't working like it should! 

The team decided to proceed with the sedation and bone marrow aspirate since fluid could go into the line. Elena was finally sedated three hours after her scheduled procedure time.  Here it was our first time in the out patient clinic at Egleston, not knowing anyone who is about to perform a procedure that Elena has had countless times and we were aggravated and frustrated. Many prayers went up and we said "Hallelujah!" when Elena awoke from sedation, bone marrow aspirate complete, no complications, and BOTH sides of her line were working properly!!  We said our goodbyes and thank yous and quickly walked across the street to Emory's Winship Cancer Center for Elena's radiation simulation appointment.

There, nerves set in  - wondering what this appointment would really be like.  Everyone there was wonderful! They clearly explained what was happening and it wasn't so bad.  Elena had a CT scan and xrays taken of her lungs so that metal shields can be made to protect her lungs from the radiation treatments.  She also went to the room where the treatments will take place. She laid on the bed in the position she will be in for her treatments.  The technicians took measurements along her entire body in order to calibrate the machine specifically to Elena and the amount of radiation that has been prescribed for her.

After our long and stressful day, we were thrilled to come home to a surprise luau party for Elena!  Some of our cousins from Wyoming are in town visiting.  They knew Elena was not happy about having to go to her appointments.  So, Shaye, Logen, and Olivia planned a fun party complete with snacks (all of Elena's favorites!), punch, decorations and a hula contest.  It was wonderful!  After snacking, laughing, and dancing, they are chilling out watching a movie.

We are continually being blessed by the loving actions of others!  Today alone, prayer warriors were storming the heavens for us, thoughtful gestures of love and compassion were being planned to help make our day brighter, and a delicious meal was delivered to us by a dear, sweet friend so that we could spend this evening together worrying about one less thing.

We are grateful!  We are blessed!  We thank God for each day!

In Him,
The Tates

The perfect reminder from another dear, sweet friend this morning:
"If I rise on the wings of the dawn, if I settle on the far side of the sea, even there your hand will guide me, your right hand will hold me fast." Psalm 139:9-10

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