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

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

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

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

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

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