Monday, December 24, 2012

Merry Christmas Eve

During this season of Christmas, many things went undone. We tried to focus on the positives... what we could do, what we believe, and on one another. Today, we have been trying to figure out what to say in a Christmas post - - how to expresses the joy we have in the midst of a year of pain; how to wish each of you, near and far, a very Merry Christmas.

We found the words we were searching for in today's post by Emily Freeman at "Chatting at the Sky".

"May your Christmas be filled with laughter. As you miss those who can’t be with you, as you feel the truth of where you are right now, as you move through the packing and the cooking and the coming together, may the miracle of Christmas carry a lightness into the center of your being.

The world is broken, but Christ has come. Light wins. Hope lives. And the souls of the saints breathe a sigh of sweet relief."

We miss who we can't be with. We feel the truth of where we are now - sometimes it is oh so painful, sometimes it is oh so wonderful. We are cooking and wrapping. We are thankful that the four of us are together in this wonderful place called 'home'. We thank God for the miracle of Christmas for it brings us joy, peace, light, love, grace, and ever-lasting life. We are broken, but we are not alone. Christ is here! 

We wish you blessings today and every day!
Enjoy your Christmas!

In Him,
The Tates

“The virgin will be with child and will give birth to a son, and they will call him Immanuel” —which means, “God with us.” Matthew 1:23
“I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.” John 16:33

Friday, December 21, 2012

What a Day!

What a day! One we were so happy to see!
After nine long months,
Elena had her central line removed today!
No more painful dressing changes!
No more flushing the lines at home!
In two short days, showers can start again! YAY!

We thank God that Elena has never had an infection with her line, that her line functioned well for most of the time, and that this line saved her from countless needle pokes! We also thank God that she will be able to put this part of her journey behind her!
 Our reminder to flush Elena's lines

  Where Elena's line enters her chest and
then goes through a vein to her heart
 How the nurses are able to access Elena's line
 Our chest of medical supplies
needed to care for Elena's lines

 Flushing Elena's lines at home for the last time!
 Elena this morning - feeling no pain - ready for surgery!

 Elena after surgery - feeling good!

Elena with our friend Erin
She is three years post BMT!
Erin was one of many at CHOA
who took great care of Elena today
 NO more reminders needed! Woo hoo!
Elena happy to be home
with another souvenir from the hospital
Thank you for praying for this day!

"The Lord has done great things for us, and we are filled with joy."
Psalm 126:3

Thursday, December 20, 2012

Surgery Tomorrow

Elena's clinic visit went well again on Wednesday.  All of her counts went up.  Praise God!  That helped reassure us and the doctors in making the decision not to do a BMA with the CVL removal surgery.  The procedure is scheduled for 8:00 Friday morning with an arrival time of 6am.  Please pray for safe travels to the hospital. 

We are all very excited for the surgery to take place tomorrow, especially Elena.  She said tonight that it is going to feel weird without her line.  Imagine getting so used to something so out of the ordinary that when things get back to normal, it feels weird!  Please pray for her to feel normal again real soon.

Please also pray:

- for peace and patience in the waiting

- that God will guide the doctor's hands in the removal and that all will go smoothly

- that Elena will heal quickly

Thank you in advance for covering us in prayer once again!

In Him,
The Tates

Tuesday, December 18, 2012

Tuesday Update

Elena's pre-op appointment went well today.  We met with the surgeon who will be removing her central line on Friday.  He explained the procedure to Elena and asked her if she had any questions.  Her only one was, "when can I take a shower?"  He laughed and told her soon.

Elena told us after the visit that it wasn't as bad as she thought it was going to be.  It has got to be hard on her not knowing what to expect.  She has said all along that she just wants it to be Friday already so all of this will be over! 

Not yet, however.  Tomorrow brings with it yet another visit to the clinic for more lab work and testing.  The doctors are being very thorough in making sure that everything is on track for Elena's line removal surgery and we are grateful.  She, however, is getting a little frustrated with these seemingly endless checks and re-checks. 

Speaking of, we received a call this afternoon from day surgery at Scottish Rite wanting to set up a pre-anesthesia appointment for Elena for Thursday.  With this being her only day without a scheduled appointment, combined with the fact that she has already had her share of procedures requiring anesthesia, we politely asked if this visit was absolutely necessary.  They said that they will get back to us.  Hopefully it will only be to tell us what time to arrive on Friday morning. :) 

Please pray for Elena to have the patience and stamina needed to endure these next several days.  Pray for good lab results and answers to questions tomorrow.  Pray for God's hand to be in all of the details and for complete and total healing for Elena.

Praying and Believing!

In Him,
The Tates

"Be strong and take heart all you who hope in the Lord."  Psalm 31:24

Monday, December 17, 2012

Monday Update

Today Elena had her regular BMT clinic visit at Egleston.

Big praises that the day did indeed go smoothly.  Elena said today went by more quickly than she thought it would.  That's always a great thing! 

Here's a recap of today: Elena did have her pentamine breathing treatment that is designed to help prevent pneumonia.  Her counts were up and down.  Her red cells and platelets went up, but her white cells and ANC went down. She did not have the adrenal gland test, so, unfortunately, they want Elena to return to the BMT clinic on Wednesday for counts and to have this test.  Elena is not happy about adding a FOURTH appointment to this week.  We do not have any news about her blood chemistry results yet, we should know more on Wednesday.

One thing that did come up at today's appointment that we weren't expecting was being asked if we wanted Elena to have a bone marrow aspirate on Friday while sedated for her line removal surgery.  We thought that since Elena's latest chimerism test results showed 100% donor cells, she was not going to have a BMA.  We decided to put off making this decision until we see what Elena's counts are on Wednesday.
Please pray for God to grant both the doctors and ourselves the wisdom in making the right decision whether to have a BMA on Friday or not.  Please pray that what decision needs to be made is clear and that we have peace in the decision made.

Tomorrow Elena has to be at Scottish Rite for her 10am pre-op appointment.
Please pray that nothing will prevent Elena from having her central line removed on Friday.

Thank you for continuing to lift our family up in prayer!  Thank you for your notes of encouragement!

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 minds in Christ Jesus." Philippians 4:6-7

Sunday, December 16, 2012

The Week Ahead

Since hearing the great news of Elena's latest chimerism test results, we have been trying to let go of the seemingly constant worry and concern and simply enjoy each day. While there is still so much that we can't do, we can enjoy playing games together, watching movies, decorating for Christmas, baking cookies, and thanking God for each new day.

Elena has a busy week ahead. 

Tomorrow, she has her regular BMT clinic visit at Egleston.  She will also go to the pulmonary lab for a monthly breathing treatment designed to help prevent pneumonia. We are unsure if she will have the adrenal gland test tomorrow or not.  On Friday, there was confusion about whether or not it had been schedule.

Please pray that Elena's counts will have risen, that the day goes by smoothly with no unnecessary waiting, and that all lab and blood chemistry results will be favorable.

On Tuesday, Elena will be at Scottish Rite for a pre-op appointment.  Yes, pre-op!  Elena will be having surgery this Friday to remove her central line!!  She is so happy and ready to have her line out!! No more painful dressing changes! No more itching from the tape! No more flushing the lines at home! Showers can start again!

Elena's line has been in for nine months. We thank God that Elena has never had an infection with her line, that her line functioned well most of the time, and that this line saved her countless needle pokes! We also thank God that she will be able to put this part of her journey behind her!

We will keep you updated after each appointment this week and post prayer requests for Friday's surgery.

In between these appointments in Elena's life, Liv will be performing with her school chorus on Tuesday night.  Unfortunately, Elena and one of us will not be able to attend. Liv will also be counting down the last three days of school before beginning Christmas vacation. We are all already for some much needed rest and family time. Time to focus on one another and the birth of our Savior.

Thank you for keeping us in your prayers!

In Him,
The Tates

"Cast all your anxiety on Him because he cares for you." 1 Peter 5:7

Monday, December 10, 2012

No More Waiting

Dr. Q just called - - chimerism test results are in - -

Praising God for this gift!
We are overflowing with thankfulness and joy!!

"The Lord is my strength and my shield; my heart trusts in Him, and He helps me. My heart leaps for joy, and with my song I praise Him." Psalm 28:7

Monday, December 3, 2012

More Waiting...

Today was another long clinic appointment day.

Tonight we are wishing we had more good news to share than not so good news.

Focusing on the good - Elena's kidney function tests were stable and one slightly improved, so it looks like we are on track to have Elena's central line removed before Christmas. That would be a huge praise!!

All other news from today's visit - not so good.
First, all of Elena's counts dropped. What does this mean? We aren't sure yet.  A one time dip in counts would not be a big concern.  If this is the beginning of a downward tread, then it would be concerning.

So, when you combine this news with a chimerism test showing less than 100% donor cells - - could we possibly be dealing with another relapse.  Yes, we could be. But for now, no one, other than God knows for sure. We have not had the "this could possibly indicate a relapse" discussion with Elena.  At this point, she's not interested and for now that's ok. We wish we had her carefree, trusting attitude! She's beyond amazing!!

Now, the plan is to wait on today's chimerism results. 
We were told that we should know these results by next Tuesday or Wednesday.  If the results are less than 100% donor cells, a bone marrow aspirate will be scheduled.  If they are 100% donor cells, we will once again be thanking God for another answered prayer and praising Him.

Regardless of the chimerism test results, Elena's next clinic appointment will be on Monday, December 17th.  As usual, labs will be drawn, but due to other not so good news, Elena will also have a ACTH stimulation test to test her adrenal gland function.  Because Elena has been on steroids for so long, her adrenal gland function could be suppressed. We didn't really ask many questions about this, we figured we'll cross that bridge when we come to it.

Another negative about today was that two blood chemistry tests showed that Elena's liver enzyme levels rose again and that there are signs of inflammation.  Some medications adjustments were made to see if we can get these liver numbers moving in the right direction.

So, how are we feeling tonight..
"We are hard pressed on every side, but not crushed, perplexed, but not in despair, persecuted, but not abandoned, stuck down, but not destroyed." 2 Corinthians 4:8

for 100% donor cells
for the peace that passing all understanding in the waiting
to see and feel joy in each and every day

In Him,
The Tates

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

Sunday, December 2, 2012

Another Clinic Visit

Tomorrow morning is Elena's BMT clinic appointment at Egleston. She will have another chimerism test.  While blood will be drawn for this test tomorrow, we will not know the results from this test for about two weeks.

Please pray for this test results to show 100% donor cells.

Please also pray that all other lab results will continue to be good and clear of any complications or concerns.

Pray that Elena's kidney functions tests will be favorable and we will be able to move forward with making plans to have Elena's central line removed.  The two top things on Elena's Christmas list are to have her line removed and to be able to stop taking pills.  We are so thankful and praise God for his protection of Elena's line to have remained infection free  and for no major complications with the line for these past eight months!  That is huge!

Thank you for continuing to pray for our family!!

In Him,
The Tates

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