Giving Thanks

 Settling down tonight, thanking God for a wonderful week. Despite the waves, we have so much to be thankful for today and every day!

 A simple table full of history - one which has had four generations around it when it once sat in Tennessee. Now, it sits in our home where we gather to eat, talk, laugh, do homework, play games, celebrate birthdays, read the paper and more.

 

 The girls made these cute turkeys.

Thank you Mrs. Beck for all of the supplies!

 

 We enjoyed time outside.

 

 Always LOVE our hammock!

 Perhaps being unable to travel or spend any time with friends this past week would make you go stir crazy....not our girls!  They just got creative!

 

 The BEST way to end our week!

Going to church together for the first time since July 8th!

 

Elena's doctor gave her the ok to go - if we had Elena wear her mask from the time we left the house til we got back home, we sat alone in the balcony, we arrived late and left early so that Elena would not come in contact with anyone. Elena agreed and we did it! Praise be to God!

 

Thank you for continuing to pray for our family!

Please pray for God to be in the details as the three of us return to work and school and Elena readjusts to us not being home with her.

Closing this post with great words from Emily at "Chatting at the Sky" :
May your week be filled with the secret things of the Spirit. May your difficulties, disappointments, and deeply felt pain hold within them the chief goal of reminding you how deeply you long for God. Listen to the whisper of desire, the kind that comes from your new heart. There is no depth or height that can separate you from the love of God.
Enjoy your week, friends.

Thanksgiving

Thinking about our lives over the past nine months, we easily remember the days filled with uncertainty and pain, frustration and the unexpected. Now in this next phase, we are definitely feeling the tiredness one would feel from such a long journey and as you know this journey is still not over. Even though we are worn out and tired, we are still so very grateful.

Today, we talked about some of the things we are thankful for.

Elena said she is thankful she is alive - we are too!

We are grateful for each new day. We find joy in so many things: being together, a quiet morning, pizza and movie nights, music, books, naps, cooking together, an evening walk, telling one another good night each night...

Other things that topped our list:
God for His presence in our lives - his peace, his grace, his constant love and answered prayers 

Liv - who brings joy and laughter to us each day

Elena and her strength, perseverance, and amazing attitude

Our home which has always been a safe haven for us

Our families and our friends - who love us - forever, for always, no matter what

Our employers - who have, and continue to support us throughout all of our ups and downs.

So many friends, family members, and strangers who have supported us in countless ways - - through prayers, cards, emails, texts, meals, gifts, money, services, and more!  The support is simply amazing and so very appreciated!!

Our army of prayer warriors  - you are so big and so faithful!

Today and every day, we try to focus on the good and not let the bad drag us down. We continue to choose joy. We are blessed and for that we are grateful!

Hoping you found time today to give thanks to God and to count your blessings.

In Him,
The Tates

“Let the peace of Christ rule in your hearts, since as members of one body you were called to peace. And be thankful.” Colossians 3:15

Day +119 XXWHY???

Almost nine months ago, when we found out that Elena had indeed relapsed, we said it felt like we were in the ocean.

From February 27, 2012:
"One moment, we are standing at the water’s edge, feeling ok. The next moment, we are being knocked down by an enormous wave, gasping for air, body aching, struggling to stand up. Then, we find our footing and stand, only to be knocked down again by the next thought, feeling, or action."

Today, and so many days since then, we have felt the same exact way.

We feel that way today because we were told that Elena's most recent chimerism test results show that 99.5% of the cells in the sample were XXY (donor cells) and .5% were XX.

What does this mean?
Elena's cord blood donor's baby has Klinefelter syndrome.  

Klinefelter syndrome is a genetic disorder in which there is at least one extra X chromosome to a normal human male karyotype, for a total of 47 chromosomes rather than the 46 found in genetically normal humans. While females have an XX chromosomal makeup, and males an XY, individuals with Klinefelter syndrome have at least two X chromosomes and at least one Y chromosome. 

After Elena's doctor shared this news with us, she said that this should not have any affect on Elena.  While it shows up in blood testing, it does not affect her genetic makeup.  The two things are completely different.

It is so weird and strange and does not make any sense. After today's clinic visit, we once again have more questions than answers.

Why did Elena's doctors wait almost two months to tell us these results?
Why do companies not screen cord blood for genetic disorders?
How many cord blood transplant recipients have also received cord blood with Klinefelter syndrome?
Can any physician anywhere tell us if it could have a negative effect on Elena?
Does any of this really matter?


As if that wasn't enough to deal with, we also have the added factor of the .5%; that one cell in the sample of 200 was XX.  That could mean one of two things.  From the Oncology Cytogenetics report:  "The single XX cell may be of patient origin (Elena - female); however a donor cell with artifactual loss of the Y chromosome cannot be ruled out. Repeat testing to evaluate engraftment status is recommended."  How do you lose a Y chromosome??

So, Elena will have another chimerism test on December 3rd.  The results of this test will take about two weeks.  We do not want Elena's blood cells to be in her body. We want 100% donor cells.

How are we feeling?
Overwhelmed
Anxious
Angry
Concerned
Numb
Tired

We are feeling all of these things.

We are also feeling thankful, grateful, and hopeful.

We are thankful for each new day.
We are grateful that we have friends, family, and strangers praying for us.
We are hopeful that even though we do not know what lies ahead, God does.

We are trusting in Him.
We are praying and believing.

We ask for you to do the same.

In Him,
The Tates

“For this reason I kneel before the Father, from whom his whole family in heaven and earth derives its name. I pray that out of his glorious riches he may strengthen you with power through his spirit in your inner being, so that Christ may dwell in your hearts through faith. And I pray that you , being rooted and established in love, may have the power, together with all the saints, to grasp how wide and long and high and deep is the love of Christ, and to know this love that surpasses knowledge – that you may be filled to the measure of all the fullness of God.” Ephesians 3:14-19

Day + 112 Clinic Update

Overall, today was another good day at the clinic. Praise God!

We had plenty of time to ask questions and talk about how Elena is doing. The sty on her eye is pretty much gone and is not a concern. Nausea every once in a while ok, not sure why it would be happening? The new rash on her arms and legs a slight concern. 

Could it be GVHD of the skin? Yes. Is it? That is uncertain at this time.  What are we going to do about it?  Her doctors are going to hold her steroid at its current dose, not continue with the taper this week. Elena will start using a topical steroid cream on the rash twice a day and use a moisturizing lotion all over twice a day. Since Elena had acute GVHD of the skin while in the hospital, she is at a higher risk of having chronic GVHD of the skin now. We will treat the rash topically this week and return to the clinic on Tuesday, November 20th for another checkup and more blood work.

Speaking of blood work, Elena's counts are good, but some of her blood chemistry levels are not where they should be. Everything that Elena has been through - chemo throughout the first battle, high dose chemo during this second battle, and other oral drugs have really taken a toll on Elena's kidneys. Two certain blood tests that measure her kidney function have risen for the second time in a row.  Her kidneys are stressed.  Please pray that the adjustment made to Elena's current meds will help increase her kidney function.  Please also pray BIG that Elena will be able to drink the required 64 oz a day.  We fight the battle daily.  She has to drink and it is not an easy task for her. Basically, drinking that much daily will be like taking her pills, something she has to do and Elena really doesn't like being told she HAS TO do anything.

We are still waiting on the CMV and IGG levels for this week. Praying for no setbacks with either of these tests.

Elena's body is still in the early stages of recovery. We know that complete and total healing will take time and we are trying to be patient in the waiting.

Please continue to pray with us for complete and total healing.

In Him,
The Tates

"My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalm 73:26

Day + 111

After months of fighting and praying and waiting, Elena finally came home after her bone marrow transplant.  While we are so very thankful that Elena is home and that we are all together again, life is still hard.

Last week, a dear friend, who is also living in the world of cancer, summed up how we have been feeling.  For us right now, life is on hold and spinning like crazy at the same time.

Life feels like it is on hold right now because we can't do any "normal" family things outside of our home.  Family life is still unbalanced with only half of us leaving to go to church and with no family outings possible right now. It's very strange feeling "stuck". Life feels like it is full and crazy because of all of the "normal" things filling our lives as well.

Tomorrow morning, Elena has another clinic appointment.  Elena has had a few new issues we are a little concerned about - including a sty on her eye, a couple of days battling nausea and now a new rash.  She was feeling 100% better today, but the rash is still there.

Please pray for:
wisdom for the doctors
a clear explanation for the rash and other issues
a quick resolution to any problems
Elena to not have GVHD at all!
all of Elena's blood levels and counts to be where they should be

We also ask for you to pray for our friends currently in really hard battles with cancer and its terrible side effects. Tim, Lily, and Grace.

Please continue to pray for complete and total healing.
Thank you for all of your prayers today and always!

In Him,
The Tates

"Let us therefore come boldly to the throne of grace, that we may find mercy and grace in time of need."  Hebrews 4:16

Day +103

Big praises for a great clinic visit!

We received some good news tonight after a long day at the hospital.  Elena's counts look great with everything holding steady.  The CMV virus once found in her blood is no longer detectable, which means that she can stop the anti viral medication she has been getting every night through her CVL.   And third, after a little bit of a delay, Elena's CT scan went very well.  We hope to hear soon that her lungs are clear and there is no sign of the nodules seen on her earlier scan.  The infectious disease doctors will view the scan tomorrow and give their recommendation for future treatment plans.

Another praise is that we are continuing to decrease Elena's steroid dose weekly and hope to have her off of it completely by Thanksgiving.  Slowly but surely, we are reducing the multitude of medications Elena is on and allowing her body to do more of the work.

Please continue to pray for complete and total healing.

Thank you for all of your prayers today and always!

In Him,
The Tates

"I will sing to the Lord, for He has been good to me." Psalm 13:6

DAY +100

After a bone marrow transplant, Days +30 thru +100 are considered to be a part of the early recovery stage. These days are the most critical. They are when the most complications and infections are seen in patients.

We are praising God that today is Elena's DAY +100!!

So many times, we could not see this day in our future. There were days we lived hour by hour, moment to moment.  Today is a celebration!  A celebration of new life - of this day - of this moment!

We are thankful to each person, known and unknown, that God has placed in our lives.

You have prayed for us without ceasing.
You have fed us.
You have carried us.
You have given gifts, food, gift cards, money, time, and love.
You have reached out.
You have cleaned our house.
You have done our laundry.
You have mowed our grass.
You paid our over $600 bill at the Ronald McDonald house.
You have showered Liv with love and cared for her.
You have cried and laughed with us.
You prepared our house for Elena's return.
And you did it all cheerfully and without us asking.

You have truly been the hands and feet of Christ.

We would not have made it to today without Christ or without you!

THANK YOU!!
We will be forever grateful!
Praise God from whom all blessings flow!

In Him,
The Tates

"...On Him we have set our hope that He will continue to deliver us, as you help us by your prayers, then many will give thanks on our behalf for the gracious favor granted us in answer to the prayer of many."  2 Corinthians 1:10b-11