Friday, August 31, 2012

Day +37

Today has been a better day!  Elena is still dealing with fevers and nausea, but has also had periods of time where she's felt pretty good.  We try to maximize our efforts toward doing normal stuff during these times so Elena can feel like she is doing what she wants to do and not what she has to do.  This also makes the have to dos easier to do, so it is a win win situation.  Well, when kept in perspective it is anyway.  Truth be told, we would much rather be planning a big football watching, Labor Day partying, last big blowout of the summer weekend like most families are doing.  But since we aren't, we will make the most of our current situation and know that we are in the best possible place for this time in our lives.  We know it won't last forever.

Looking back on the past 47 days we realize how much perception influences reality.  Until your view of the world changes, your life never will.  We all live life looking through our own set of rose colored glasses and have them focused on different things.  Our focus has definitely changed over the years, but has become even more refined during the past several weeks.  This time spent as we have has helped us confirm our belief of what life and family are really all about, and for this, we are grateful!

Please continue to pray for Elena's fevers to go away, for her lungs to clear and for her nausea to cease.  Pray for complete healing and peaceful days and nights ahead!

In Him,
The Tates

"So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal."  2 Cor 4:18

Thursday, August 30, 2012

Day +36

Yesterday was a great day for the wonderful news we received.  We are so thankful for all of our blessings and praise God for His provision.

Today was spent assessing our current situation and preparing for another battle.  Elena had another CT scan this afternoon on her lower abdomen to make sure there was no sign of infection in her liver or kidneys.  Praise God this scan was clear! 

We then met with the pulmonary team to discuss Elena's lungs.  We talked about a lot of what ifs and different scenarios and the fact that they agreed that the best course of action for now was the anti fungal medicine that was started yesterday afternoon.   

So now we practice our patience and pray!  We pray as hard as we did for the transplant because this has the potential to be as serious if not more so.  Elena's immune system is very suppressed and she needs all the help she can get to fight this infection.  Please pray that it doesn't spread and that the medicine she is on is all she needs to take care of the problem.  As always, we pray for complete healing for Elena's body!

In Him,
The Tates

"He gives strength to the weary and increases the power of the weak."  Isaiah 40:29

Wednesday, August 29, 2012

Day +35

Today was a day of looking for answers and getting results.  Elena's fever mystery continues, but we may be getting closer to an answer.  This afternoon she had CT scans of head and chest to look for any potential signs of viruses.  The head scan was unclear so we had a visit from the ENT team here in Elena's room.  They performed a scope of her nasal cavity to make sure there was nothing suspicious going on there.  After a little discomfort, and a few sneezes, we were happy to get the all clear from ENT. 

That left the chest scan.  This scan did show some signs of possible infection, so Elena was put on an anti fungal medication to help clear this up.  Please pray that the medication does its job and takes care of the problem and that this in turn takes care of the fevers.  We are hopeful to have found the cause of Elena's troubles and pray for a complete cure. 

After discussing all of this with the doctors we were left with mixed feelings about what was going on.  Is this the cause?  Will this be the cure?  What if we missed something?  All we can do is give it up to God and know that He is faithful and just and in control.

Before leaving for the day the doctors also told us that they had more results from blood tests done last week.  These tests were done to determine what percentage of Elena's blood is her old blood versus donor blood.  This would basically tell us how successful the transplant was.  No words can express how happy we were to hear that Elena has 100% donor cells!  This means that she is 100% cancer FREE!  Praise God!

Tonight we are rejoicing over such wonderful news and giving all of the glory to God!  He is so good!  We also come before Him with the aforementioned prayer requests of complete and total healing for Elena.

In Him,
The Tates

"I lie down and sleep; I wake again, because the Lord sustains me."  Psalm 3:5

Tuesday, August 28, 2012

Day +34

Today began much the same way as yesterday; with Elena running a fever and feeling pretty crummy.  The fever has stuck around pretty much all day, but Elena has had brief moments where she felt "OK".  Thankfully one of those times was when she received a visit from Kelley O'Hara, a member of the USA Olympic Gold Medal winning Women's Soccer Team!  Kelley's visit definitely brightened Elena's day!  We thank her for taking the time to visit not only Elena, but all of the children here in the Aflac Cancer Center and for bringing her gold medal with her.  It was a real treat to meet a real Olympic Champion!


After this great surprise, Elena seemed to have a better afternoon overall.  We were able to walk her laps without much pain or fear of nausea, and catch up on some of her other daily tasks.  It is so nice to have our sweet girl feeling more like herself!  Please pray that this continues into the night and for all of her tomorrows!  She deserves it!

In Him,
The Tates

"In peace I will lie down and sleep, for you alone, Lord, make me dwell in safety."  Psalm 4:8

Monday, August 27, 2012

Day +33

Today was another up and down day.  At 5:00 this morning, Elena spiked a fever of 103.1.  By early this afternoon it was back down to 98.6 and we thought that was the end of it, but it wasn't.  It soon rose again to over 102.  We have since completed that cycle one more time and as of 9pm it is back over 102.  Thankfully none of the cultures they have taken are positive for any bacteria.  Oddly enough, Elena's doctors believe the fevers may be from some of the medicine they are giving her to help her white cells come in.  Go figure!  Whatever the reason, they are rough on Elena and she is tired of them.  She is more than ready to start feeling good again.  Please pray for Elena's fever to go away and stay away!

For whatever reason, it doesn't seem that we can get all of Elena's issues taken care of at the same time.  Just when we think we have a handle on one thing something else pops up.  As you can probably imagine, this is more than a little frustrating.  Especially after such a long time of trying. 

We go to bed tonight comforted by the fact that though we may not understand it all, we know that God does and He is in control. 

In Him,
The Tates

"You will keep in perfect peace those whose minds are steadfast, because they trust in you."  Isaiah 26:3

Sunday, August 26, 2012

Day +32

Today marks the end of Elena's sixth week here in the BMT unit.  We have come a long way but seem to be dealing with some of the same issues on a daily basis.  Today was no different.  Elena has battled fevers and nausea all day and has now developed a nosebleed.  Some would think that these are all minor issues that can be taken care of easily.  You would probably be right if not for where we are and how long we have been dealing with them.  Forty-two days is a long time to be prodded and poked and asked to do things that you don't feel like doing.  Add to that the number of pills Elena has to take on a daily basis and it is enough to make anyone irritable to say the least. She will have taken a total of 42 pills by mouth before her head hits the pillow tonight.  

Elena will also be receiving a second unit of platelets tonight to help with her nosebleed. 

Please pray that this works and that her fever goes away.  Pray for a rest-filled night and for a better day tomorrow.  Pray that Elena's counts will rise and that her body will be healed.

In Him,
The Tates

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

Saturday, August 25, 2012

Day +31

Here we are 41 days into this battle.  It's been one month since Elena's bone marrow transplant. We have said it before and we will say it again - we are weary.

Elena spiked a fever this morning. They think it might be from the IGIV (antibodies) she has been receiving.  As with all oncology kids, they started a 48 hour antibiotic as a precaution and drew labs for cultures.  Hopefully, we will know the results of those tomorrow.  Please pray that Elena does not have any type of infection.

Elena has battled nausea, leg pain, and headaches on and off all day.  She just feels plain crummy. 

Please keep praying.

In Him,
The Tates

"God is within her, she will not fall; God will help her at break of day."
Psalm 46:5

Friday, August 24, 2012

Day +30

Those of you who know Elena know that she is a very loving and caring person,  One who just wants to have fun and make sure that everyone she loves is happy.  Well after spending a lot of good quality time with her we have seen that and so much more.  She has been through so much in her young life, and she has witnessed even more.  More than anyone should have to process in 10 lifetimes.  She hates the fact that she is sick and that her life is so hard. We all do.  But one thing that makes Elena different than most is the fact that she hates that other kids are sick and have to go through what she is going through.  With all that she is dealing with she still hurts for others and has such a compassionate heart toward them.  She truly is an amazing young lady and we thank God for her daily!

Elena is growing up so fast and feels like she is losing her childhood to cancer. 

Please continue to pray for peace, pray for strength, and for us to keep on keeping on.

Pray that with everything Elena is going through that the transplant has been successful and that there is absolutely no cancer in her body - not a single cell. We want this to be Elena's final battle with cancer.

In Him,
The Tates

"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

Thursday, August 23, 2012

Day + 29

Today was definitely a day with more good moments than bad.  This was evident in the way we were able to enjoy most of the day and how those few bad moments seemed to stand out so you noticed them, but they weren't the main focus.  Kind of like the sunburn you get at the beach, or the sticker in your finger when picking blackberries; annoying, but able to be overcome. 

Tonight we go to bed thankful for the progress that Elena has made and hopeful for even better days to come.  We appreciate all of the love and support we receive daily and hope you know that we count you all as one of our many blessings.  We would not be able to continue on this journey without you.

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."  Lam 3:22-23

Wednesday, August 22, 2012

Day + 28

Today has been a day with it's share of ups and downs.  We had some good moments and some not so good moments.  We laughed  and we cried.  We praised God for answered prayers and we questioned why new things occurred.  We tried to find joy in the little things, but often had to look through sadness to find it.  We are happy to have this day behind us, but even more pleased that we have each other to lean on.  This is too much for anyone to handle on their own, but not too big for God.  We give it all up to Him and have faith that He will see us through this.

In Him,
The Tates

"Trust in the Lord with all your heart and lean not on your own understanding; in all your ways submit to Him, and he will make your paths straight."  Proverbs 3:5-6

Tuesday, August 21, 2012

Day + 27

What a difference a day makes!  And a ton of prayers!  God definitely heard them and we reaped the benefits today.  Praise Him!  Although we had a rough night and early morning, Elena's doctors worked hard to figure out better ways to treat her nausea and aches and pains so she was able to enjoy a much better afternoon and evening.  She was so amazed by how good she felt this evening that she said she couldn't believe it and wished she always felt that good!  It was so nice to see that big smile and hear the joy in her voice!  God is so good!

Elena's counts have also given us reason to smile and praise the Lord!  Her white cells and ANC increased again today.  We are encouraged by this steady increase and pray that this trend continues.  We also pray for better days ahead with more good times than bad.  Our wish for her is what she already said; that she always feels that good!

In Him,
The Tates

"Rejoice in the Lord always. I will say it again: Rejoice!"   
Phil 4:4

Monday, August 20, 2012

Day + 26

Today has been a very long, very stressful day.  Elena has been dealing with stomach issues all day.  She is frustrated that she can't really describe how she is feeling, and we feel helpless because nothing we have tried seems to work.  Please pray for a restful, peace filled night and a better day tomorrow.  Pray for wisdom for the doctors and patience for all of us as we work through yet another obstacle that has shown up in our path.

In Him,
The Tates

"I keep my eyes always on the Lord.  With Him at my right hand, I will not be shaken."  Psalm 16:8

Sunday, August 19, 2012

Day + 25

A Little Perspective

Today marks the end of Elena's fifth week in Rm #3206. She has spent the last 35 days in a room roughly the size of her bedroom at home with the only view of outside coming in the form of a 30" x 48" window that looks out over the Emergency Room entrance. She only gets to leave this room when she has a procedure in another part of the hospital, or to do her daily laps; laps that now total over 330 and when added together are the equivalent of over 10 miles!

Elena has also been working hard completing 8 other daily tasks in various amounts. These have all served to promote the healing of her body as well as to give her a routine of sorts. She has done a tremendous job with all of these and in return we have seen the desired results. They have just taken a toll on Elena physically and emotionally. She said today that it really didn't matter anymore where she was, she just wanted to feel good. We want the same thing for her. Though one of us has been here with her at all times, neither one of us has been through all that she has endured. She is tired and weary. We all are. We knew going in to this that it was going to be tough. We just didn't know how completely draining it would be.

With that being said, we are so very thankful for the progress that Elena has made. She is right where the doctors thought she would be at this time. Praise God! Her body is increasing its output of white cells and she is transitioning some of her meds from IV to oral. These are all positive signs and necessary steps toward Elena's eventual discharge.

Please pray for peace, patience and perseverance as we continue toward our ultimate goal of complete and total healing for Elena! We know that God will be with us every step of the way, and that His will shall be done.

In Him,
The Tates

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

Saturday, August 18, 2012

Day + 24

Another early start to our day here in Rm #3206.  Midnight labs showed that Elena needed both whole blood and platelets.  She began the blood transfusion around 3:30am followed by platelets and their ever accompanying friend Lasix.  We were up every two hours from 10pm - 6am, and then every 30 minutes from 6 - 8am once the lasix kicked in.  The rest of the morning was spent trying to keep her nausea at bay.

This afternoon Elena perked up a little and was able to complete her laps with one of her favorite nurses.  They even made it fun by walking each lap doing something different like pretending to be elephants, or playing simon says.  The rest of the afternoon and into the evening was spent chilling out in front of the tv watching movies and just trying to feel better.  The jury is still out on whether or not this has done the trick. 

Though today has been a so-so day physically, it has also been a positive one in that Elena's white count and ANC continue to rise. Praise God!  Please pray for this trend to continue and for Elena's body to also begin to produce red cells and platelets.  Please also pray for Elena's nausea to subside and for her appetite to return.  She has not eaten anything of substance by mouth in 34 days. 

Thank you for praying us through this time in our lives!

In Him,
The Tates

"For we are God's handiwork, created in Christ Jesus to do good works, which God prepared in advance for us to do."   Eph 2:10

Friday, August 17, 2012

Day + 23

Praising God that Elena did not have to have platelets last night!! What a wonderful answered prayer!  Please continue to pray that Elena will be able to get the rest she needs at night.  Unfortunately, even without a transfusion, that didn't happen last night.  Itching, nausea, and beeping machines still caused problems.

Today, we caught up with Elena's Beads of Courage.

Beads of Courage is a non-profit organization out of Tucson that is designed to honor the challenging journeys kids with cancer have to take. The colorful beads are a way to visually represent the many challenges these kids overcome along their treatment journeys.

Working on Elena's tenth strand of beads.

You can earn 21 different treatment beads
and 6 different milestone beads.
Here are a few types: red = transfusions, black = any type of "poke", white = chemo, yellow = overnight stays at the hospital, glow in the dark beads = radiation, tests/scans = light green, rainbow = care team visits (OT, PT, RT, CLS) and weekly completion of jobs

Elena's second purple heart.
This bead recognizes the completion of treatment.
When Elena was looking at the selections of purple hearts, she decided to choose this one because it had a twisted hard vine on it and it was "ugly". She said having to go through treatment for cancer a second time was like this heart twisted and ugly.  We pointed out to her that this heart also had a glimmer and beauty underneath the vine. To us, this symbolizes Elena's beauty that always shines.

Elena earned 393 beads during her first battle with leukemia. During her second battle with leukemia at Scottish Rite, she earned 211 beads and since being here at Egleston for her bone marrow transplant, she has earned 188 beads. So far, through this program, Elena has been able to collect 792 beads that symbolize her courage and honors the milestones she has achieved along her journey.

We are so very proud of her and her strength and determination.  She has fought and fought hard for six months now and for 29 months  prior to her relapse.
She has persevered under terrible circumstances. She has done so with such grace.

Elena's story and battle are not over. Please continue to pray for continued strength, perseverance, and complete healing here on Earth. 

In Him,
The Tates

"Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.” Joshua 1:9

Thursday, August 16, 2012

Day + 22

Despite a fourth night of having a platelet transfusion and Lasix, we are happy to say that today has been a better day! Praise God!

Today, Elena has completed almost all of her jobs and her aches, pains, and nausea have lessened a little. Overall, things are looking up.

Please continue to pray for Elena's body to start producing red blood cells and platelets.  These two things are no where near the great pace of the growing white cell count.  However, we have been reassured that this is normal.  White cells engraft first, followed by red, then platelets.

Please pray that as Elena grows stronger and stronger each day,  the terrible fatigue and all over achiness will lessen, that she will soon begin to eat and drink on her own, and that she will stay fever and infection free.

Please pray that while engraftment is happening - there is not one single cancer cell remaining in her body.

Please pray that tonight will not include a fifth straight night of a needed transfusion.

Pray that tonight will only be filled with much needed, deep, peaceful, restoring sleep.

In Him,
The Tates

"Surely God is my help; the Lord is the one who sustains me." Psalm 54:4

Wednesday, August 15, 2012

Day + 21

Sadly, it's been another so-so day.

Elena is achey and tired.  She wants to go home.  She has battled nausea most of the day.

Everything Elena has gone through has really taken its toll on her and her body. Due to needing platelets followed by Lasix the last three nights, Elena has had three sleepless nights.  Her white count is continuing to come in. She is up to .64 - praise God! The doctors say that this engraftment process can be the cause of the achiness and pain.  It could also be because an infection is brewing. There are no signs of that at this time- Elena has been fever free for four days now - more big praises!  Please pray that Elena continues to stay fever free. Another thing adding to Elena's continued fatigue is that her red blood counts are extremely low.  They have been hanging out right above the need for a transfusion mark for four days now. Please pray her body starts to produce more and more red blood cells and platelets. 

Elena did perk up around 6:00 tonight and enjoyed doing some sand art with Erica, one of the fabulous child life specialists here at Egleston.


We also had a really good first meeting with Elena's homebound teacher late this afternoon. We learned who her teachers are and a little about what she will be learning this year. Elena also received two assignments to complete by her next school session on Friday.  Her teacher also delivered cards from some of Elena's former teachers and an amazing bundle of gift cards from Elena's NGMS family! What a blessing!

We are ending our night with a fav nurse, Becca!
Happy, happy!
Our first day here was spent with Becca.
We have enjoyed several days and nights with her since!
We count her among our many blessings!

Thank you for continuing to pray for Elena's complete healing!
In Him,
The Tates

"Blessed be the Lord - day after day He carries us along." Psalm 68:19

Tuesday, August 14, 2012

Day + 20

Today is Elena's 30th day in Room 3206.
It has been a so-so day. 

More back, shoulder, and neck pain.
More nausea and throwing up.
Another platelet transfusion. Her seventh in 18 days.
Most of her jobs have been completed.
A few smiles while checking out her new school supplies.
A little sadness that she's not in school.
A little excitement about tomorrow and her first meeting with her home bound teacher.

We tell her all the time how amazing she is. She has spent four full weeks inside one little room - with no fresh air filled with heat or humidity, no warm sunshine on her skin, no raindrops to dash through. We now know that these things are gifts that shouldn't be taken for granted. We should be grateful for each moment we are given to experience each one.

Thanks for praying and for believing in Elena's complete healing!

In Him,
The Tates

"I lift up my eyes to the mountains—where does my help come from? My help comes from the Lord, the maker of heaven and earth."
Psalm 121:1-2

Monday, August 13, 2012

Day + 19

The best way to describe today is to say that it was the opposite of yesterday.
Very little joy and happiness. More pain and sadness.

Unfortunately as last night was ending, Elena started itching.  She was absolutely miserable.  It took three different medications to get it under control.  Overnight, Elena's counts showed she needed platelets. She received these at 4 am, followed by Lasix. Then, the all over itching happened again.  As you can imagine, very little sleeping happened overnight and into this morning.  After more Benadryl and other medications, Elena finally went to sleep.  And she slept and slept and slept.  She took an eight hour nap. She did wake up briefly a few times, but did not get out of bed for eight hours.  Her body obviously needed the rest. When she woke up this evening, she cried.  She said she did not feel like herself. She was still tired and wanted to go home. She did gather some strength and was able to bathe and do one mouthcare and one set of breathing exercises.  We did not walk laps. Today is the first time in 29 days that Elena did not complete 100% of her daily jobs.  She has had enough.  We have had enough.

Last night, we closed the post thanking you for being there for every high and every low.  Little did we know that we'd be experiencing the two back-to-back.

Thank you for still being out there regardless of what kind of day we are having in here.

Sadly, here in the world of childhood cancer, a young 11 year old boy lost his battle.  In a room 20 yards away, he was taking his last breath, as Elena was settling into her much needed rest.

That is our world here.  We are praying you are thankful for your blessings in your life out there.

In Him,
The Tates

"My soul is weary with sorrow; strengthen me according to your word."  Psalm 119:28
Praying tonight that He will fill us with His strength and that His word will bring us comfort.

Sunday, August 12, 2012

Day + 18


Today we are celebrating big praises!

The steroids prescribed are doing their job! Praise God!
They have helped improve Elena's lung function and her skin rash.  Elena was able to sleep flat on her back and side without oxygen all night long!  Her rash is no longer "angry" - raised, red, and covering her entire body. Her skin is smooth and less angry. The steroids have also kept her fever free for over 24 hours! Praise the Lord!

An added bonus, Elena's white cell count went up from .24 to .42!! This big boost may be from the steroids, but that's ok, we'll take it.

We are so thankful that this most recent medical decision appears to be helping Elena's body heal. Please pray that Elena will continue to grow stronger each and every day, bringing her closer and closer to complete healing.

All of these huge improvements have brought some much needed joy and happiness to Room 3206.  Thought we'd catch that joy on film and share it with you.

 Ready to knock out today's laps

 Enjoying a much needed rest after walking

Elena has also started to try eating again
One bite of strawberry yogurt and two bites of orange sherbet was today's attempt 

Ending the day with another fav nurse - Audra!!
We love her!!

Thanks for continuing to pray!
Thanks for being there for every high and every low!

In Him,
The Tates

"This is the day that the Lord has made; let us rejoice and be glad in it."
Psalm 118:24

Saturday, August 11, 2012

Day + 17

Today has been a very long day.  A day that almost feels like two separate days rolled into one.  It feels that way because today was the day we switched places for the upcoming week.  This is always an emotional time for both of us because neither one of us wants to leave the child we are with, yet at the same time, we can't wait to get to see the one we have been missing.  This doesn't even take into account the lack of time we get to spend with each other as we try to catch one another up on the goings on at the locale in which we are headed.  Then once we are in place at our new destination, we spend good quality time catching up with sweet girls who have missed being with us!  And that is just the first day.  We spend the rest of our time balancing our home life, work life, and extra activities all while trying to be the best parent we can be to the child we are with at the time.  Sorry, didn't mean to take up so much time talking about our housekeeping issues, but they are as much a part of this journey as anything else.

Now as for Day + 17 at the hospital, things were pretty much the same as yesterday.  Elena has been dealing with nausea and fevers almost all day.  Two notable differences were that Elena received a platelet transfusion at 3:00 this morning and her doctors have started her on a steroid to try to take care of those fevers.  Please pray for good results on both of these fronts, and for a better day tomorrow for all of us.

In Him,
The Tates

"God is our refuge and strength, an ever present help in trouble."   Psalm 46:1

Friday, August 10, 2012

Day + 16

Today was a rough, puny feeling kind of day.  Elena ran a fever and battled nausea for most of the day.  She had periods of time where she felt ok, but the nausea and fever always seemed to find the way back.  The doctors ordered a CT scan early this afternoon to check Elena's head and chest for possible signs of infection, but they were negative.  Their only other thought about the reason for these lingering effects is the engraftment process; that this is Elena's body reacting to the new cells introduced into her system.  Please pray for this to work itself out and for new healthy cells to take over and replenish Elena's body with exactly what she needs.

A look at the numbers showed that Elena's white cells remained level at .24.  Her red count dropped and her platelets actually increased.  When talking with the doctors about this we learned that it is normal for these numbers to yo-yo back and forth early on.  We will just have to be patient and pray that in time they will all be where they need to be.

Please also continue to pray for strength and stamina as each day takes so much out of Elena and her body struggles to keep up.  She is fighting with all she's got, so let's give her all we've got!  She deserves it!

In Him,
The Tates

"Finally, be strong in the Lord and in his mighty power.  Put on the full armor of God, so that you can take your stand against the devil's schemes."  Eph 6:10-11

Thursday, August 9, 2012

Day + 15

Good Evening Everyone!  We wanted to post a little earlier tonight to share more good news! (and maybe get to bed before midnight)  Elena had a better day today overall.  Although she still struggled with all of the same issues, and got frustrated with them on more than one occasion, things just felt different.  They felt better.  In looking at the numbers, they were better.  Elena's white count rose again to .24, and her red cells went up as well.  She even registered a .06 ANC which up until this point had been undetectable.  God is Good!

As mentioned above, Elena is still dealing with the yuck.  Today her nausea and foot pain have been giving her trouble.  Walking laps was really a chore, but she persevered and completed all of her jobs.  We are so proud of her and how she is handling everything!

Thank you for all of the love and prayers.  We can definitely feel them!  Please continue to pray for positive steps to a full recovery.  We need you to keep doing what you are doing so we can keep doing what we are doing.  And we know that God has it all in His hands!

In Him,
The Tates

"Be on your guard; stand firm in the faith; be courageous; be strong."  1 Cor 16:13

Wednesday, August 8, 2012

Day + 14

Today was another productive day here at CHOA.  Elena had a chest x-ray at around 9:00 this morning to check her lungs and to see if it would give the doctors any insight as to why she needs oxygen at night and when she is resting.  A BIG praise is that the x-rays were negative for fluid.  We are going to work on Elena's cardio and do more deep breathing to try to help open her lungs.

Another BIG praise is that Elena's white count went up from .16 to .17.  I know this is not a big difference, but I've seen medals handed out for less.  We know that this number has to get a lot higher, but it is a step in the right direction.

Other than that it has pretty much been status quo around here in Rm # 3206.  We are focusing on incremental increases in all that we think we can control, like laps and mouthcare etc., and are sticking with the FROG approach for all of the rest and are going to Fully Rely On God!

In Him,
The Tates

"Trust in the Lord with all your heart and lean not on your own understanding; in all your ways submit to Him, and he will make your paths straight."  Proverbs 3:5-6

Tuesday, August 7, 2012

Day + 13

This morning we received some good news regarding Elena's white blood cells.  She has some!!  Her count this morning was .16.  While this is minuscule, it means that they are coming in!  Praise God!  This is what we have been praying for since transplant.

With this, however, comes new side effects.  Elena has been running a fever on and off for several days, has been on oxygen every night and has a rash over most of her body that we are treating with a steroid cream 3 times a day.  We are cautiously optimistic that what is happening is the engraftment of the new stem cells within her body and not graft versus host disease (gvhd) or Engraftment Syndrome (ES), which can both present these same side effects.  The doctors are watching everything closely and are contemplating using a systemic steroid to treat the rash and pulmonary issues if they persist.

Please join us in praying for Elena's body to accept her new cells and to continue to make many more healthy cells to help combat these side effects.  Pray for wisdom for the doctors and patience for all of us as we wait and watch.

In Him,
The Tates

"...I have come that they may have life, and have it to the full."  John 10:10

Monday, August 6, 2012

Day + 12

Have you ever seen the movie "Groundhog Day"?  Sometimes, because of the constant repetition in our days, it feels like we are living it here.  Sure, the names and faces change and some new things are added, but the constant sense of sameness can wear on you.  That is where we are now.  Elena is getting sick and tired of being sick and tired   She wants to go home; to be normal.  She asked tonight why we couldn't be a regular family where nothing happens to your kids. :(  What do you say to that?

Well, just like in the movie, we know that there is something we can do to affect the outcome.  We  can pray!  Please pray for stamina to keep going.  Pray for patience in the waiting.  Pray for peace and comfort.  And pray for healing!

In Him,
The Tates

"But those who hope in the Lord will renew their strength.  They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint."  Isaiah 40:31

Sunday, August 5, 2012

Day + 11

Today marks the end of Elena's 3rd week in the hospital.  Twenty-one days away from home, family, church, and friends.  Twenty-one days spent with only one parent at a time while her other parent and her sister try to keep life away from the hospital as normal as possible.  It is not easy for us to be separated under any circumstance, but add in all of the challenges we are facing and it begins to take a toll on everyone.  Please pray for peace and patience as we continue to balance our new hospital life with our home life and all of the issues related to each.  This will be even harder now that school has started and with it a more demanding home life. 

Please also continue to pray for healing for Elena.  Pray that her body accepts her new cells and begins to produce many more healthy ones 

In Him,
The Tates

"Be still before the Lord and wait patiently for Him."  Psalm 37:7

Saturday, August 4, 2012

Day + 10

We thought we would do something a little different today.
We are going to try to give you a glimpse of what life is like here in Room 3206.

Elena has been here in Room 3206 for 19 days.
She is not allowed to leave her room except to walk her laps on the BMT floor each day.  Here is what goes on in a typical day:

Saturday, August 4, 2012
Day + 10 Post Transplant

12:00 am - vitals and labs drawn - Elena is running a high fever and has been all evening. We convince her to take Tylenol. One of our fav nurses is back tonight - Praise God for Nurse Maggie!

12:05 am - mouth ulcer begins to bleed

12:12 am - bleeding stopped - put on oxygen for the night

12:15 am - adjust pillows and bed to a good upright position - Elena has been sleeping upright because of the terrible congestion from the mucositis - all tucked in for the night

1:30 am - Nurse Maggie in to hang Cellcept (anti-rejection medication)

2:15 am - a pump beeping - "battery system failure" - it had come unplugged from the power strip

2:50 am - a trip to the bathroom - each time this involves taking off the oxygen, unplugging the pulse ox, unplugging the power strip from the wall, gathering Elena's tubes in your hands and carefully walking to the bathroom - repeat all of this to get back in the bed

2:55 am - while in the bathroom, Elena's nose starts to bleed

2:59 am - a pump beeping "air in line"  - call nurse

3:06 am - nosebleed stops - platelets low - 12 (below 10, they transfuse) - if Elena has another nosebleed, she will get a platelet transfusion

3:12 am - oxygen back on, all plugged in and tucked in again

3:45 am - a pump beeping "infusion complete" - call nurse  - do 4am vitals early - back to sleep

5:30 am - time to change out some medicine on pump (some medications run continuously and the bags or syringes need to be changed throughout the night and day as they empty, other medications run for only a certain amount of time - 1 hour, 2 hours, 30 minutes -and have to be started and stopped manually on the pumps)

7:05 am - another change of medicine on pump

7:15 am - a trip to the bathroom

7:23 am - back in bed - sleep on and off

9:00 am - terrible all over pain - nauseous - throw up - vitals - fever is back - weight down a little - rounds - doctor decides to change out one antibiotic for another one and add an additional antibiotic - even though nothing has grown in Elena's blood cultures, he wants to cover her just in case there is an infection brewing - also still doing Lasix during the day to continue to pull built up fluid out of Elena's body - also increasing pain pump meds

9:35 am - a trip to the bathroom

9:45 am - back in bed - a pump beeping "occluded line" - call nurse - another fav nurse, Becca, back today - Praise God!

9:55 am - a trip to the bathroom - yes, the Lasix is working

10:03 am - back in bed - a pump beeping -  "occluded line" - call nurse

10:15 am - a trip to the bathroom

10:21 am - back in bed - a pump beeping - "infusion complete" - call nurse
Watch the Olympics

10:47 am - a pump beeping

11:00 am - a trip to the bathroom - another little nosebleed, no transfusion, Lasix over

11:25 am - complete a mouthcare and breathing exercise

11:34 am - fever, cold rag on head, oxygen on, resting

11:36 am - a pump beeping - "infusion complete" - call nurse

12:00 pm - vitals - start new antibiotic

12:30 pm - Becca ups pain pump levels

12:51 pm - a volunteer stops by - we send him away - no counts = no visitors

1- 1:30 pm - Elena has a "normal" reaction to the new antibiotic - she's beet red
and gets a dose of Benadryl.  During this time she also gets another mouthcare and set of breathing exercises completed. We also put the new steroid cream all over her body for the rash.

1:32 pm - watch more Olympics

1:42 pm - a pump is beeping - "infusion complete" - call nurse

1:54 pm - a pump beeping - "occluded line" - call nurse

2:55 pm - a pump is beeping - "infusion complete" - call nurse

3:30 pm - a trip to the bathroom

4:10 pm - Oxygen monitor goes off - O2 back on - vitals

4:33 pm - complete another mouthcare and set of breathing exercises - suction out mucositis yuck - watch an episode of Toddlers and Tiaras on Netflix (thanks to a friend!)

5:20 pm - get ready to go walk laps - unplugged, mask on

5:47 pm - laps completed - lotion up peeling feet and hands

6:30 pm - caps on lines changed - watch another episode of Toddlers and Tiaras

6:47 pm - a pump beeping - "air in line" - call nurse

7:09 pm - a pump beeping - "air in line" - call nurse - Cellcept is a very "bubbly" medicine so this happens a lot

7:15 pm - Elena sleeping - oxygen back on

7:23 pm - a pump beeping - "air in line" - call nurse

7:40 pm - say goodbyes to Nurse Becca - Elena hugs her and tells her in her raspy, junk filled voice that she loves her so much - so happy she will be back tomorrow!

8:00 pm - vitals - fever - Nurse Maggie back again tonight - Yay!

8:15 pm - Elena back to sleep

9:15 pm - Elena wakes up nauseous - we still have jobs to do

9:30 pm - take an Aveeno oatmeal bath

9:45 pm - throw up bile and blood

10:00 pm - lather body with new steroid cream

10:10 pm - lotion up hands and feet with a different cream

10:30 pm - fever rising - take nighttime pill

10:50 pm - suction out mucositis

11:04 pm - completed fourth and final mouthcare and set of breathing exercises for the day

11:13 pm - oxygen back on - check temperature again - same - going to go ahead and take Tylenol

11:25 pm - adjust pillows and bed, all tucked in until midnight vitals and then we will begin another day - our 20th -  in Room 3206

We hope this gives you a little better understanding of what Elena's life is, and has been like since checking in.  As you can see there is never a dull moment, and very little time for rest. This doesn't even show you the linen changes, cleaning and disinfecting, and hand washing that is needed throughout a day. We pray that you continue to keep Elena and her complete healing in your prayers.

In Him,
The Tates

"Do you not know? Have you not heard? The Lord is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and His understanding no one can fathom. He gives strength to the weary and increases the power of the weak." 
Isaiah 40: 28:29

Day + 9

- - Sorry - - due to computer problems,
Friday's post couldn't be posted until today - -

Today has been an up and down kind of day.  One that started early with Elena's midnight labs showing that her platelet and red cell counts had both fallen below low threshold  levels and that she would need transfusions.  Starting at 3:00 am, Elena was to receive 1 unit of platelets and 2 units of red blood.  This was all complicated when after the platelets, and during the first unit of blood, Elena started running a slight fever.  We were told that if her temp rose more than 1 degree during the transfusion, it would have to be stopped.  It rose .9 degrees.  Praise God!  

After a break to get in all of Elena's "normal" treatments, and deal with real bad nausea, the second unit of blood was given.  At one point during the morning, in pain and sick to her stomach, Elena lamented that "this is the worst day ever."  She said that she had never hurt so bad or felt so terrible in her whole life.  

Thankfully that was short lived.  Her day actually got progressively better after a visit from her doctors.  They told her that she was doing great and that they were taking her off of all but one of her morning and evening pills.  Another big praise!  Elena told them that what started out as a terrible day was turning into a good one!

The rest of the afternoon and evening continued to roller coaster up and down, but never to the degree of the morning.  Please pray for more good times than bad, for stamina and strength, and for the power and grace of our Lord and Savior to heal Elena's body completely!

In Him,
The Tates

"The God of all grace...will Himself restore you and make you strong, firm and steadfast."  
1 Peter 5:10

Thursday, August 2, 2012

Day + 8

Today has been another good day.  It has been a day filled with the same struggles and hurdles and challenges that we have seen here in days gone by, but not any new ones.  That is good news!  Elena still doesn't like any of it, and who would, but she is familiar with all of it and knows she can deal with it.  Please continue to pray for her strength and stamina to endure all that lies ahead.  We are still at the beginning of a long hard road.

Today was also a day full of love and encouragement from near and far.  We are amazed at the number of responses we have received from the story that aired on 11Alive and are grateful for each and every one of them.  It feels good to know that there are people out there willing to walk this journey with us and send out prayers ahead of us.  Our God is an awesome God!

In Him,
The Tates

"We must go through many hardships to enter the kingdom of God."  Acts 14:22

Wednesday, August 1, 2012

Day + 7

Here is an early update for today.  Elena has been battling pain and nausea for most of the morning.  Her doctors have increased her baseline pain medicine to help stay in front of the pain.  This is seems to be helping, but it is also making Elena more sleepy.  That is not altogether a bad thing as she needs her rest.  Please pray that Elena's pain and nausea will subside, and that her rest will be healing.

On another note, we heard from Jaye Watson this morning and the story will run during the 7 0'clock news tonight on 11Alive. 

Thank you for all you do for all of us!

In Him,
The Tates

But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness."          2 Cor 12:9