Hanging On

You would think that by now we would be able to handle mountain high hallelujah moments quickly followed by low valley moments.  We found out earlier today that it isn't as easy as we may have thought.

This afternoon, another wave came and knocked us down.
Dr. Lew called with the results of Elena's bone marrow test.
Her bone marrow still shows residual disease.  There are still detectable leukemia cells present. This test showed .4% MRD - an increase from the April 18th bone marrow test that showed .1% MRD.  There is a margin of error with the test and Elena has received more chemo since then, so she will have another bone marrow test next Thursday.

Even Dr. Lew said that this was disappointing, but we still have options.  He is working to identify those options so that we have a clear picture of what lies ahead.

 

While we are tired and weary from yet another crashing wave, we are so very fortunate to be able to go out of town this weekend.  Family friends are loaning us their condo in Gulf Shores. We will be leaving tomorrow and returning on Monday. The beach has always been a safe sanctuary for us. We are grateful to have this blessing at this moment.

Please join us in praying for:
-God to direct Elena's doctors as they try to determine what our next steps are
-God to give us and the doctors His perfect wisdom about what is right for Elena
-God to give us the strength, courage, and hope we need
-us to have peace and patience in the waiting
-Elena to be protected from any infections and fevers while we are out of town
-Elena's mouth and throat sores to quickly and completely go away
-God to continue to be in the details of our lives and in His plan for Elena
-us to enjoy the right now and not miss it because we are thinking ahead to what might be

In Him,
The Tates

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

We are home!!

Hallelujah! Praise the Lord!  Amen!

We are so happy that we are home and we are thankful for your prayers!

We ask that you continue to pray for Elena.
She has started to develop some mouth sores.  They are bothersome and painful. They also cause her to not be able to or want to eat.  Tonight we came up with a list of liquid or soft things she could try to eat tomorrow.
Her spirits are great even though all of this has taken a toll on her body.  Her hands, feet, and head are peeling and she says her entire body hurts.

Please pray that all of these side effects will stop.
Please pray for Elena to remain fever free.
Please pray that the bone marrow results will be free of any cancer cells.
Please pray that we will be able to go on a little getaway this weekend.
Please pray for much needed rest for all.

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

A Good Night

Last night, we had a girls' night at the hospital. Liv stayed the night. Even though Elena felt bad most of the evening because of a borderline fever, it was great to be together!

We woke up this morning thankful for answered prayers!
Elena has remained fever free since last night.
She is eating and drinking.
She only got up twice last night.
Her counts are good.
The nurses only came in 6 times overnight - not 10.
The blood cultures are currently negative.

Best of all, if Elena remains fever free for the rest of the afternoon, she will be able to leave late this afternoon or early this evening!! She has a dose of IV antibiotics she needs to finish before that can happen.

We are so happy and excited at the possibility of beginning our summer together at home!
We have a whole lot we want to do between now and June 18th!

We are still waiting on bone marrow results.  We are not expecting to hear anything until tomorrow or Wednesday. Please continue to pray for clear results.

We thought we'd share an entry from a blog called Chatting at the Sky. Each week there is a post titled "For Your Weekend".  They are always meaningful and speak to our hearts.
This is from yesterday:

"May your weekend be filled with water to dip your feet in and music to fill up the morning. May you resist the urge to compare yourself to those who seem to have it easy, and may you learn the peace that comes from thankful hands in the midst of things that are hard. If the rocks insist on finding their way into your shoes, may you allow yourself a moment to snap a picture. And I hope you find enough raspberries to fit on the tips of all ten of your fingers."

So - we will start this week trying to say "It's not fair" less, giving thanks more often, and finding peace in all things.

In Him,
The Tates

A Rough Night

Here we are after 4:00 in the afternoon and we still have not turned on the lights in the room or for that matter left the room.  It was a rough night.  Unfortunately Elena was up about every hour for one reason or another.  Despite Tylenol, her fever continued to rise hitting over 103 at about 2:30 am.  The doctor then gave her Motrin. That took care of the chills and fever. The nausea also continue to get worse and Elena got sick. Combine all of that with fluids running nonstop for now 35 hours and you can see why last night was a rough one!
Elena has tried to rest all day.  This is hard to do with fluids running, pumps beeping, medical staff coming in and out, aches and pains, and meds to take. So since sleep wasn't happening - Elena started watching episodes of Little House on the Prairie.  As our friend said, that's good medicine : )

Elena had been fever free since 2:30 am, but close to noon, she started to run a fever again.  More labs were drawn.  Antibiotics have continued around the clock as well.  Still no news on the cultures, so we wait.

Wait for news about the blood cultures.
Wait for Elena to want to eat and drink.
Wait for Elena to be fever free for 24 hours straight.
Wait for much needed rest.

Praying in the waiting!
In Him,
The Tates

"Wait for the Lord,  be strong and take heart and wait for the Lord." Psalm 27:14

Hospital Stay Update

Elena's third day in the hospital is coming to a close. She has finished her 36 hours of high dose Methotrexate and has received 16 out of 36 hours of post-hydration fluids. She has endured 3 nose bleeds, one of which was attended to by 3 of the local clowns in the area. Don't you love children's hospitals!

She has also had her ph levels checked twice.  After having such a high dose of chemo, the ph level of her blood has to be checked - too high or too low can be a problem. At the 42 hour check, her level was .54.  At the 48 hr check, it was .24.  It needs to be below .1 to go home.  So far the levels are dropping as expected - praise God! Please pray that Elena's levels  continue to drop to where they need to be in order to prevent any side effects from the Methotrexate. 

Other than the three nose bleeds and a loss of appetite, Elena has handled everything well so far. 

However, in the four hours we have been trying to write this post, Elena spiked a fever.
They have already drawn blood for cultures and started her on an antibiotic.  Not only will Elena's ph levels have to continue to drop, but she will have to be fever free for 24 hours before she can go home.  Please join us in praying for these things!

This afternoon, we were happy to have a visit all the way from La. from Uncle Patrick (Mark's brother), Aunt Angie, and cousin Stephen.  Stephen is in town playing in a baseball tournament.  We enjoyed walking around the hospital with tour guide Elena, being outside, and pizza and movie night together.



We will update again tomorrow.
Thank you for your prayers.

In Him,
The Tates

"Wait for the Lord, be strong and take heart and wait for the Lord."  Psalm 27:14

This Is Hard

Remember these posts when Elena was first diagnosed with a relapse:                       

What we are thinking and saying...
and
How are we feeling...

Well, we have been thinking and feeling those same things again.

We feel like we have this huge looming deadline hanging over our heads.
We feel like we can not do everything we want and need to do.
We feel like we are living under so much pressure in so many ways.
We are tired.
We are dreading the long separation during transplant.
We are trying to balance school, work, and catching up on things that need to be done around the house with enjoying family time. Needless to say, it is challenging.

What lies ahead is CONSTANTLY on our minds.

We asked a friend whose son is six months post transplant (Praise God!) how she handled it all - her response (after laughing) was that she didn't handle it. She wisely said that "This isn't something you can handle. It is something you survive and you do whatever it is that helps you and Elena survive."

We are trying to survive.

Thursday, May 24th - Elena will have a bone marrow aspirate and a lumbar puncture at the clinic. She will then be admitted into the hospital (Scottish Rite) for high dose chemo Methotrexate that will be given via IV for a continuous 36 hours! 
They estimate she will be in the hospital for 4 days.

If her bone marrow test on May 24th comes back showing no leukemia cells, then we will proceed with the following schedule:

At this point, Elena will be transferred to Egleston. They do not perform bone marrow transplants at Scottish Rite.

Tuesday, June 5th - a consent meeting and evaluations
Wednesday, June 6th - more evaluations (heart, kidney, liver, lung function tests)
Tuesday, June 12th - sign consent forms and meet with radiation oncologist
Wednesday, June 13th - Liv's annual MRI
Monday, June 18th - admit into Egleston for bone marrow transplant
Tuesday, June 26th -  bone marrow transplant day!

We ask for your prayers.

THIS WEEK:
- for Thursday's bone marrow test to show 0% leukemia cells
- for Elena's body to be able to handle this week's upcoming chemo treatment
- for this week's hospital stay to really only be four days
- for Elena to experience NO nausea, mouth sores, or any other side effects from the chemo
- to enjoy the right now and not miss it because we are thinking ahead to what might be

LOOKING AHEAD:
- for God to prepare each of us to endure the stress of Elena's upcoming appointments, transplant and long hospital stay
- for us to be able to fill the days ahead with joy and focus on what we can do, not on what we can't

Thank you for helping carry us through with your prayers.
This battle is much bigger than last time, in different ways it is also much harder.
We are so thankful that many of you are standing firm and that you continue to be there for us.  Thank you for your steadfast love, prayers, and support!

In Him,
The Tates

"Wait for the Lord; be strong and take heart and wait for the Lord."
Psalm 27:14

It's Not Fair

We have been hearing that a lot at our house.

The first day of summer vacation is next Thurday. 
What should we be doing?  Sleeping late, eating a great breakfast, playing outside. 

What will we be doing?  We will be headed to the clinic for Elena to have another bone marrow test and a lumbar puncture. After that, she will be admitted into the hospital for a 3-4 day stay to receive a high dose chemo treatment.

Kids are making summer fun to do lists.  Elena is making a "What I want to do before my transplant" list.

Kids are anxiously awaiting the pool to open.  Elena will not swim in a pool, ocean or lake all summer long.

People are planning their summer vacations, we are planning how to manage an upcoming 30-45 day inpatient hospital stay.

Summer brings with it warm, sunfilled days. Elena will not feel the sun on her face or a warm summer breeze for her entire hospital stay.

Summertime is family time.  Our family will be separated.  Children under 12 are not allowed in the transplant unit.
Liv is 10.

It's not fair.
It is going to be hard.
It makes us mad.
It is overwhelming.

It is also easy to get stuck here - in the mad, angry, overwhelming part of this.

With your prayers, we will not stay there - stuck.
We will look up.
We will seek him.

Thankfully, we also have reminders from precious friends and family members!
This week we were encouraged by these thoughts.
"Your low times of despair will be followed by times of comfort and hope."
"I know He's holding you and it's my prayer you feel it when you need it most."
"We need to think beyond this summer, think how wonderful next summer is going to be."

We need HIM.  We thank Him for your prayers and your never ceasing support. You bring HIM back when we are stuck.  Thank You!

In Him,

The Tates


"I cry aloud to the Lord; I lift up my voice to the Lord for mercy. I pour out my complaint before him; before him I tell my trouble. When my spirit grows faint within me it is you who knows my way." Psalm 142:1-2

Awards Night

Elena goes to an amazing school with a wonderful staff.  She has an incredible team of teachers who go beyond teaching. They care about her and encourage her. The school has high academic expectations for all students.  They also believe students should pursue excellence in all areas including leadership, creativity, and citizenship. Last night, the administration and faculty at the school recognized these successes during their awards program.

We were so proud of Elena.  She received two awards.  One for maintaining an A average in all of her classes all year long and another for who she is.  The second award was called the "Top Dog" award.  Each seventh grade teacher chooses a boy and a girl who they believe exemplifies exceptional character and leadership. This award is a great honor.  Only about 25-30 students out of approximately 600 received this award.

What made this evening even more special is that one of Elena's really good friends, Casey, was the other recipient of this award from their teacher, Mrs. Loke

This is what Mrs. Loke said about them:

Casey: He is one of the most compassionate people I know. His concern and care for others, constant positive attitude and persistent work effort make him an outstanding role model for others. He is a friend to everyone, and I wish I had 100 more like him!

Elena: This student has a spirit which is infectious. Her enthusiasm for learning and friendly disposition light up any classroom. This year, she has set a wonderful example to students and teachers about persevering through any obstacle. She is a true testament to overcoming adversity with a smile, and her positivity touches everyone she meets. We can all learn a lot from Elena Tate.

Elena and Casey with Mrs. Loke

It was an amazing night. As parents we are so thankful that Elena goes to a school that not only values academics, but honors character as well.  We teared up not only for Casey and Elena's honors, but for the special needs kids who were also recognized along side non-disabled students.  It was wonderful!

We are so proud of Elena and Casey!!  Casey has always been amazing to us. 

Over the years, Elena has struggled on so many levels. One day last year, she was particularly upset about things and wanted to talk about it.  After she was done filling us in on what was making her sad, she also told us about a bright spot in her day.  She said that each day during one of the class changes she passes Casey and each day he puts his hand up for her to give him a high five. It makes her feel good. It makes her feel that someone cares about her.

Casey has made a difference in Elena's life. It is true that you never know what a smile or hello may mean to another person and that little things can really make a difference and have an impact. Elena said that she wished everyone treated her that way.

The pictures below show only part of the reason Casey is so deserving of the Top Dog award he received last night.

Casey and another great friend, Ethan, came to visit Elena when she was in the hospital.

They even did physical therapy with her!

 

Last Friday, Casey stopped by after school
to give Elena her birthday present.

He gave her a scrapbooking kit for her birthday. When he knew it was Elena's birthday, he asked his mom if he could get her a present. He knew she liked to scrapbook.

 

Before leaving, Casey agreed to test out the homemade

 "photo booth"  we had set up for
Elena's birthday party that night.

We definitely count Casey and Elena's teachers as blessings in our lives!

In Him,

The Tates

"Finally, brothers, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things."
Philippians 4:8

Elena

Elena is 13!

Thirteen years of joy, laughter, tears, trials, and triumph.
We thought we'd share thirteen things we love about Elena:

1- her big beautiful smile that lights up the room
2- her outgoing personality - she's never met a stranger
3- how her golden brown eyes sparkle in the sunlight
4- her need for independence - it has made her strong and confident
5- her singing
6- her perseverance - when others might give up, she continues to stand
7- her love for making crafts, both large and small
8- her friendliness - she cares for all people - young and old
9- she's smart - oh, so smart
10- her creativity
11- her strength in both mind and spirit
12- how she finds joy in the little things
13- she's courageous even when she doesn't want to be

She's amazing! She's strong! She's beautiful!
We are so thankful for her!

In Him,
The Tates

"Three things will last forever—faith, hope, and love—and the greatest of these is love."
 1 Corinthians 13:13

HAPPY BIRTHDAY!

WE LOVE YOU!!!

Beautiful!

This morning - ready to go to school!

Just wanted you to know that today Elena turned 13!

We will celebrate her with a long post later.

Please leave birthday wishes in the comments section or

email them to cjmtate@gmail.com

Oh my!

This time of year is typically crazy for everyone - no matter what season you are in.
For us it means, field days, field trips, end of year parties, graduation parties, dance recitals, music performances, teacher appreciation, and Elena's upcoming 13th birthday. 
So many fun things, so many plans - it is a little frenzied.
Add to the fun chaos - a sinus infection for Liv, dressing changes, medications three times a day, and infusions at home for Elena and at times you have an unraveling household!

That is when we have to stop, slow down, and breathe in.

Stop getting lost in the preparing and planning.
Slow down to enjoy this moment - this day.
Breathe in the beauty and love that God has given us in this life, this family, this world.

Please continue to pray for each of us.

Liv to feel better and be rid of her sinus infection.
Elena to have the energy and strength she needs at home and school.
Christy as she has many responsibilities and things to complete at work as the school year comes to a close.
Mark for peace and patience in the waiting.
Protection from physical harm for Liv and Elena during their extra activities at school.
Protection for Elena from infection - we changed her dressing at home alone for the first time last night. It was rather disastrous and quite a sight!  We went through three dressing change kits!! Please let there be no complications or problems as a result of the process!
It turned out ok and we all went to bed happy!

Thank you for your prayers and for staying in this battle with us!! We are grateful!

In Him,
The Tates

"For the Lord your God is the one who goes with you to fight for you against your enemies to give you victory."  Deuteronomy 20:4

Day Three and Four Updates

It has been a really long and tiring week. We are all happy that tomorrow is Friday and Elena's last day of chemo for now. Today, Dr. Lew said that Elena looked great and seemed to be tolerating the chemo really well so far. We agree and are definitely counting that among our blessings!
Dr. Lew also talked about Elena's x-ray results. He said that osteopenia was extremely common following ALL due to all of the steroids and the disease itself. He said that no other tests were necessary and that once treatment is over, it almost always gets better over time.  Another praise!

After tomorrow's clinic appointment, Elena will have weekly labs drawn from her line. She will also begin receiving Neupogen at home. It is a drug given after chemo to help the bone marrow recover its ability to produce white blood cells which in turn helps decrease the risk of infection and fever to the patient. Elena has never received the drug before. Both of these things will be arranged through home health care soon. In about three weeks, Elena will have another spinal tap and bone marrow test. She will then be admitted into the hospital to receive another chemo drug, methotrexate. That hospital stay will only be three or four days.

Please pray for Elena's day tomorrow. 

Pray that it will go just as smoothly as the other four have.
Pray her body will continue to handle the chemo.
Pray that the chemo is killing the .1% of the remaining leukemia cells.
Pray that we will be able to coordinate Elena's home health needs with no complications.
Pray that Elena will not have any negative side effects from the Neupogen.
Pray that the Neupogen will do the job it was designed to do.
Pray that Elena will be protected from any infections and fevers.
Pray that God will continue to be in the details of our lives and in His plan for Elena.

In Him,
The Tates

"We must keep our eyes on Jesus, who leads us and makes our faith complete."
Hebrews 12:2

Day Two Update

Another day is ending and once again we are happy to say that we were blessed with another good day.
Elena continues to handle the chemo well.  She felt nauseous for most of the day and ate very little, but that didn't keep her from enjoying her visit.
She and our amazing Child Life Specialist, Karen, spent time planning and working on scrapbook pages.  Elena also played games with another girl who was spending most of her day at the clinic.

We also received the results of Elena's x-rays.  The report states osteopenia, a loss of bone mass and is not considered "serious". We did not have the opportunity to see anyone to find out any further details or to answer any of our questions.

We ask that you please continue to pray.
Pray for the doctors to know what the next step should be after seeing the x-rays.
Pray for continued rest, strength, energy, peace and patience for all. The week already feels long and we still have three more days left.

In Him,
The Tates

"Come to me, all you who are weary and burdened, and I will give you rest." Matthew 11:28