As we close the blinds on our little window to the outside world here in Rm #3206 on another positive day and settle in for the night, we reflect on all of the things we have to be thankful for:
- for a loving God who knows us better than we know ourselves
- for our families who love us no matter what
- for friends near and far who have stuck by our side
- for those who may not know us but know of us and pray
- for doctors, nurses and medical staff that truly care for Elena
- for each other
For all of these things and more, we know that we are blessed and are thankful!
We are also thankful to our new friends at 11Alive for caring enough about our family to get involved and share our story with so many. The piece will air tomorrow, Aug. 1st, on either the 5:00 or 6:00 evening news. For those who are not local, the piece will be available at 11Alive.com some time later tomorrow night.
In Him,
The Tates
"Give thanks to the Lord, for He is good, His love endures forever." Psalm 107:1
Tuesday, July 31, 2012
Monday, July 30, 2012
Day + 5
Good Evening from room 3206. Today has been a good day! One that still held all of the yuck that we have been dealing with since we have been here, but one that has also had it's share of "good" times.
It may be that we are establishing some sort of a routine, or that Elena is simply not going to let this leukemia get the best of her ( our money is on the latter ), but we have been seeing little glimpses of our sweet, spunky, silly girl peek out at some of the most needed times. This morning around 4am, during one of her many trips to the bathroom, Elena was grunting/moaning like she is prone to do to clear her throat or as a coping mechanism to help with the pain. When asked if she was ok, she smiled her silly little grin and said she was humming the One Direction song "What Makes You Beautiful". That lit up the room like nothing else could have at that moment.
Later on in the morning, she said that she felt like she was "at one of those old folks homes" because she has had to eat soft food, she needed help to go to the bathroom and she spent a lot of time laying in the bed with oxygen tubes in her nose and drooling. :) Her words, not ours. But they made us smile knowing that she was coping better than we thought she might be.
So even though Elena is dealing with things that no one should have to go through, and she has told the doctors that she can't believe that all kids that have a BMT have to go through this, she is doing it with a sense of humor and some spunk. As we have said before, this girl has substance!
As wonderful as it is to see these things in Elena, we know that we cannot and are not going through this alone. All of the posts to the blog, cards, calls and texts of encouragement are doing exactly what you want them to do; they are encouraging! Not only Elena, but all of us and we can't thank you enough! Keep 'em coming!
Please continue to pray for increased healing and rest and for decreased yuck!
In Him,
The Tates
"You, O Lord, keep (her) lamp burning; my God turns (her) darkness into light. With your help (she) can advance against a troop; with my God (she) can scale a wall."
Psalm 18:28-29
It may be that we are establishing some sort of a routine, or that Elena is simply not going to let this leukemia get the best of her ( our money is on the latter ), but we have been seeing little glimpses of our sweet, spunky, silly girl peek out at some of the most needed times. This morning around 4am, during one of her many trips to the bathroom, Elena was grunting/moaning like she is prone to do to clear her throat or as a coping mechanism to help with the pain. When asked if she was ok, she smiled her silly little grin and said she was humming the One Direction song "What Makes You Beautiful". That lit up the room like nothing else could have at that moment.
Later on in the morning, she said that she felt like she was "at one of those old folks homes" because she has had to eat soft food, she needed help to go to the bathroom and she spent a lot of time laying in the bed with oxygen tubes in her nose and drooling. :) Her words, not ours. But they made us smile knowing that she was coping better than we thought she might be.
So even though Elena is dealing with things that no one should have to go through, and she has told the doctors that she can't believe that all kids that have a BMT have to go through this, she is doing it with a sense of humor and some spunk. As we have said before, this girl has substance!
As wonderful as it is to see these things in Elena, we know that we cannot and are not going through this alone. All of the posts to the blog, cards, calls and texts of encouragement are doing exactly what you want them to do; they are encouraging! Not only Elena, but all of us and we can't thank you enough! Keep 'em coming!
Please continue to pray for increased healing and rest and for decreased yuck!
In Him,
The Tates
"You, O Lord, keep (her) lamp burning; my God turns (her) darkness into light. With your help (she) can advance against a troop; with my God (she) can scale a wall."
Psalm 18:28-29
Sunday, July 29, 2012
Day + 4
This is hard. All of it.
Tonight, we thought we'd give you an idea of the challenges Elena faces every day.
Her hands and feet are peeling.
Her head hurts most of the time.
She is nauseous most of the time.
Her body is swollen and tender.
Her mouth is completely raw making it difficult to talk.
Her throat is also completely raw and swollen making it hurt to swallow and drink.
She has to suction the saliva out of her mouth , if not, she drools.
She always feels like something is stuck in her throat.
She has a nagging cough.
She has not eaten anything in seven days.
She has to maneuver around 6 tubes attached to one pole every time she gets up.
She can not leave her room except when she walks her daily laps on the BMT floor.
She has to wear a thick mask each time she walks her laps, making it more difficult to breathe.
She has to have oxygen when she is resting or sleeping.
She has had to have blood and platelet transfusions.
She hasn't had a good night's sleep in 14 days.
It hurts to laugh or cry.
She can not get comfortable during the day or at night.
Despite all of this, Elena still fights.
She washes her mouth out multiple times a day to help prevent infection. This stings.
She uses an incentive spirometer multiple times each day to help prevent pneumonia. Taking deep breaths is not easy and hurts.
She uses special wipes on her body to keep germs off her skin. This is cold.
She takes baths each day to soothe her irritated skin.
Getting in and out of the tub with so many cords is not relaxing or easy.
She walks a minimum of 10 laps everyday to help strengthen her lungs, bones, muscles, and heart and to also help improve the movement of fluids in the body.
This takes every bit of energy she has.
Every day, we thank God for Elena - her fight, her will, her determination, her smile!
We also thank him for you - your prayers, your love, your encouragement.
We thank Him for His peace, His presence, His love, and His unfailing promises!
In Him,
The Tates
"I can do all things through Christ who gives me strength."
Philippians 4:13
Tonight, we thought we'd give you an idea of the challenges Elena faces every day.
Her hands and feet are peeling.
Her head hurts most of the time.
She is nauseous most of the time.
Her body is swollen and tender.
Her mouth is completely raw making it difficult to talk.
Her throat is also completely raw and swollen making it hurt to swallow and drink.
She has to suction the saliva out of her mouth , if not, she drools.
She always feels like something is stuck in her throat.
She has a nagging cough.
She has not eaten anything in seven days.
She has to maneuver around 6 tubes attached to one pole every time she gets up.
She can not leave her room except when she walks her daily laps on the BMT floor.
She has to wear a thick mask each time she walks her laps, making it more difficult to breathe.
She has to have oxygen when she is resting or sleeping.
She has had to have blood and platelet transfusions.
She hasn't had a good night's sleep in 14 days.
It hurts to laugh or cry.
She can not get comfortable during the day or at night.
Despite all of this, Elena still fights.
She washes her mouth out multiple times a day to help prevent infection. This stings.
She uses an incentive spirometer multiple times each day to help prevent pneumonia. Taking deep breaths is not easy and hurts.
She uses special wipes on her body to keep germs off her skin. This is cold.
She takes baths each day to soothe her irritated skin.
Getting in and out of the tub with so many cords is not relaxing or easy.
She walks a minimum of 10 laps everyday to help strengthen her lungs, bones, muscles, and heart and to also help improve the movement of fluids in the body.
This takes every bit of energy she has.
Every day, we thank God for Elena - her fight, her will, her determination, her smile!
We also thank him for you - your prayers, your love, your encouragement.
We thank Him for His peace, His presence, His love, and His unfailing promises!
In Him,
The Tates
"I can do all things through Christ who gives me strength."
Philippians 4:13
Saturday, July 28, 2012
Day + 3
Today has been another exhausting yet productive day. Elena is still fighting to get all of her jobs done no matter how she feels or what else is going on. It is a struggle at times, but she is always happy when she gets them done. :)
Over the past couple of days Elena has been retaining a little fluid. Her doctor started some medicine today to help her body get rid of it. She has been doing this about every 30 - 45 minutes, which has added a little excitement to our day. Please pray that this indeed has helped Elena with her puffiness as well as prevent any possible infection from forming in her body.
Please also pray that Elena's brand new cells and her 13 year old body get well acquainted over the next few weeks and that they make thousands more healthy cells to heal her body on the way to a full and complete recovery. That is, after all, the ultimate goal of this little exercise! That will definitely make all of this worth it!
In Him,
The Tates
"With man this is impossible, but with God all things are possible." Matthew 19:26
Over the past couple of days Elena has been retaining a little fluid. Her doctor started some medicine today to help her body get rid of it. She has been doing this about every 30 - 45 minutes, which has added a little excitement to our day. Please pray that this indeed has helped Elena with her puffiness as well as prevent any possible infection from forming in her body.
Please also pray that Elena's brand new cells and her 13 year old body get well acquainted over the next few weeks and that they make thousands more healthy cells to heal her body on the way to a full and complete recovery. That is, after all, the ultimate goal of this little exercise! That will definitely make all of this worth it!
In Him,
The Tates
"With man this is impossible, but with God all things are possible." Matthew 19:26
Friday, July 27, 2012
Day + 2
Today has been a positive day in more ways than one. It has been a day that we will learn from but one that we don't ever want to repeat. It is another day that we can put behind us as we look expectantly toward what lies ahead. In short, it was a day that we knew we had to go through in order to get to where we want to be. It may not have always been pleasant, but it was a step in the right direction.
Elena had a rough night battling mucositis and nausea. She has also dealt with these two issues all day, but has still managed to get all of her jobs done as well. We cannot begin to tell you what a tremendous accomplishment this is, but here is a little mental picture for those non-squeamish types out there All others may want to skip down to the next paragraph. We all know what it feels like to be nauseous to the point of vomiting, but imagine feeling that way while having what looks like the extract from the inside of an aloe vera plant coating your mouth and throat to the point of gagging you. On top of that, add in enough pain to where you need morphine to help cope and then go out for a nice little 1/3 of a mile stroll. It takes a lot out of Elena each day to get these things done, but once again, she knows how important all of this is to her recovery so she soldiers on. We are so proud of her!
Elena has also been battling fevers off and on all day. This, in addition to having little or no white blood cells or ANC has led us to ask that Elena not receive any visitors until further notice. This is the most critical time in her recovery and there will be plenty of opportunity to visit later. When talking to one of Elena's doctors he told us that she has a lower immune system right now than even "the boy in the bubble". Needless to say we got the point and only want what is best for Elena.
Please continue to pray for Elena's strength and stamina and spirit to hold out and continue to be enough to stack up more and more positive days!
In Him,
The Tates
"Be joyful in hope, patient in affliction, and faithful in prayer." Romans 12:12
Elena had a rough night battling mucositis and nausea. She has also dealt with these two issues all day, but has still managed to get all of her jobs done as well. We cannot begin to tell you what a tremendous accomplishment this is, but here is a little mental picture for those non-squeamish types out there All others may want to skip down to the next paragraph. We all know what it feels like to be nauseous to the point of vomiting, but imagine feeling that way while having what looks like the extract from the inside of an aloe vera plant coating your mouth and throat to the point of gagging you. On top of that, add in enough pain to where you need morphine to help cope and then go out for a nice little 1/3 of a mile stroll. It takes a lot out of Elena each day to get these things done, but once again, she knows how important all of this is to her recovery so she soldiers on. We are so proud of her!
Elena has also been battling fevers off and on all day. This, in addition to having little or no white blood cells or ANC has led us to ask that Elena not receive any visitors until further notice. This is the most critical time in her recovery and there will be plenty of opportunity to visit later. When talking to one of Elena's doctors he told us that she has a lower immune system right now than even "the boy in the bubble". Needless to say we got the point and only want what is best for Elena.
Please continue to pray for Elena's strength and stamina and spirit to hold out and continue to be enough to stack up more and more positive days!
In Him,
The Tates
"Be joyful in hope, patient in affliction, and faithful in prayer." Romans 12:12
Thursday, July 26, 2012
Day + 1
We are happy to have yesterday behind us and are looking ahead to the positive days! A new journey and a new chance for Elena's body. We know it will not be easy, but we are thankful for this opportunity.
Last night, Elena worked hard and was able to complete every one of her jobs. Her strong will and determination never cease to amaze us! She went to bed tired, but happy.
Overnight, the power of the chemo, radiation, and transplant took hold of her body. Elena's pain pump was definitely put to work last night. With each hour, the pain got worse and worse. She suffered mostly from mouth and throat pain due to the mucositis. It hurts for her to talk and swallow. She also has developed a small cough from all of stuff getting caught up in her throat. The mucositis will only get worse in the next week and will remain that way for about a week.
Elena also started running a slight fever today. This is not at all unexpected and is being treated in the same way all of her fevers in the past have been. If this trend of needing additional medications continues, Elena will need a second pole to hold all of her pumps and pouches. Not to mention a color coded diagram showing the maze of tubing she has guiding all of these things into the proper channels at the proper times.
Another complication tonight is that Elena appears to be retaining fluid. Despite having very little to drink and nothing to eat, Elena has gained weight in the past 24 hours. Her face and feet are puffy. At this time tonight, there are no plans or explanations for why this is happening. We are praying that this situation will not worsen overnight. These symptoms can be signs of VOD. We are praying that this is not what is happening. Please pray that when we see the BMT team in the morning, we will have a clear picture of what is going on and if this is normal at this time post transplant or not.
Thank you for continuing to hold us up with your prayers!!
Praying tonight for peace in the waiting and complete healing for Elena.
In Him,
The Tates
"Let the morning bring me word of your unfailing love, for I have put my trust in you. Show me the way I should go, for to you I lift up my soul."
Psalm 143:8
Last night, Elena worked hard and was able to complete every one of her jobs. Her strong will and determination never cease to amaze us! She went to bed tired, but happy.
Overnight, the power of the chemo, radiation, and transplant took hold of her body. Elena's pain pump was definitely put to work last night. With each hour, the pain got worse and worse. She suffered mostly from mouth and throat pain due to the mucositis. It hurts for her to talk and swallow. She also has developed a small cough from all of stuff getting caught up in her throat. The mucositis will only get worse in the next week and will remain that way for about a week.
Elena also started running a slight fever today. This is not at all unexpected and is being treated in the same way all of her fevers in the past have been. If this trend of needing additional medications continues, Elena will need a second pole to hold all of her pumps and pouches. Not to mention a color coded diagram showing the maze of tubing she has guiding all of these things into the proper channels at the proper times.
Another complication tonight is that Elena appears to be retaining fluid. Despite having very little to drink and nothing to eat, Elena has gained weight in the past 24 hours. Her face and feet are puffy. At this time tonight, there are no plans or explanations for why this is happening. We are praying that this situation will not worsen overnight. These symptoms can be signs of VOD. We are praying that this is not what is happening. Please pray that when we see the BMT team in the morning, we will have a clear picture of what is going on and if this is normal at this time post transplant or not.
Thank you for continuing to hold us up with your prayers!!
Praying tonight for peace in the waiting and complete healing for Elena.
In Him,
The Tates
"Let the morning bring me word of your unfailing love, for I have put my trust in you. Show me the way I should go, for to you I lift up my soul."
Psalm 143:8
Wednesday, July 25, 2012
Day 0 Transplant Day
Big Praises for a smooth transplant!
This afternoon we are lifting up thanks and praises for all that God has done and continues to do in our lives. Elena's transplant went perfectly with none of the potential side effects associated with it. Thanks for all of the prayers that were lifted up on her behalf and for continuing to walk this road with us.
Unfortunately, not everything went as smoothly as the transplant did. Because of the fact that Elena has not been eating due to the onset of mucositis and increased nausea, the BMT team decided it was time for an NG tube to make sure that Elena receives all of the nutrients she needs to assist in her body's full recovery. While the insertion of the tube went well, Elena's acceptance of it did not. She immediately began crying and demanding that it be removed. After much discussion and pleading, with none of it being very pleasant and some of it almost night-marish, we convinced Elena to leave the tube in for an hour to see if it felt any better. After waiting the hour Elena was still very uncomfortable with the tube and a decision was made to remove it. We realized then that the timing of this procedure was completely wrong and it should have been done at a later date.
Once the tube was removed Elena began to settle down and we were able to talk with her about what had happened and what the next steps were going to be. We talked about the fact that without the tube, Elena was still going to have to swallow some of her daily pills by mouth. I am happy to say that she has since done just that and is now taking a well deserved nap. This girl has got substance!
Please pray for Elena to continue to fight, for her body to make a full and complete recovery, and for all of her side effects to lessen to the point of non-existence.
In Him,
The Tates
"As for me, I will call upon God; and He will save me. Evening and morning and noon, will I pray and cry out and He shall hear my voice. He has delivered my soul in peace from the battle that was against me, for there were many with me (us)."
Psalm 55:16-18
Tuesday, July 24, 2012
Day - 1
Thank you for your continued prayers!
Last night was the same - up every two hours - we think that just might be our sleep pattern here in the hospital. Elena continues to battle side effects. Some have gotten better, others are worse. Today, Day - 1, is designed to be a day of rest. No chemo, no radiation. Elena is currently being given IV fluids, an anti-rejection drug, and a drug to help prevent VOD. All of these run at the same time through her central line, non-stop. She also has to take many medications by mouth three times a day.
Tomorrow's the day - Day 0 - Transplant Day!
Elena's bone marrow transplant will take place right here in her room around 11:00 am.
A bone marrow transplant is an infusion procedure. It is not surgery. It's like receiving a blood transfusion through your central line, except instead of getting blood, Elena will be getting blood stem cells.
Elena will be receiving cord blood from an unrelated donor. These blood stem cells will arrive frozen. The cells will need to be thawed first and then infused using a syringe. The infusion usually takes less than 10-20 minutes.
Before the transfusion, Elena will be given medications to help with any possible side effects. During the transfusion, Elena will be hooked up to monitors and closely watched for any potential side effects, such as nausea and vomiting, headaches, an allergic reaction (shortness of breath, itching, chills), a hemolytic reaction (fever, back pain, red urine) and changes in heart rate or blood pressure.
Please pray that Elena will not experience any of these potential side effects.
Today, we will be praying through the same list we posted yesterday.
Pray that Elena will stay strong and battle through the negative side effects.
Pray that Elena's pain and other side effects will be managed.
Pray that each and every remaining leukemia cell in Elena's body has been killed by the radiation and chemo.
Pray that not a single cancer cell has survived.
Pray that the chemo and radiation has only harmed the cancer and not Elena's body or mind.
Pray that we can find joy in today, as we await tomorrow's transplant.
Pray that we will be able to find peace and rest in these days.
Pray that we hold fast to His truth - "You are the God who performs miracles." Psalm 77:14.
We pray you will be too.
In Him,
The Tates
Last night was the same - up every two hours - we think that just might be our sleep pattern here in the hospital. Elena continues to battle side effects. Some have gotten better, others are worse. Today, Day - 1, is designed to be a day of rest. No chemo, no radiation. Elena is currently being given IV fluids, an anti-rejection drug, and a drug to help prevent VOD. All of these run at the same time through her central line, non-stop. She also has to take many medications by mouth three times a day.
Here's a picture of her morning pills:
Try taking those with mucositis and nausea!
Elena's strength and determination is amazing!
Tomorrow's the day - Day 0 - Transplant Day!
Elena's bone marrow transplant will take place right here in her room around 11:00 am.
A bone marrow transplant is an infusion procedure. It is not surgery. It's like receiving a blood transfusion through your central line, except instead of getting blood, Elena will be getting blood stem cells.
Elena will be receiving cord blood from an unrelated donor. These blood stem cells will arrive frozen. The cells will need to be thawed first and then infused using a syringe. The infusion usually takes less than 10-20 minutes.
Before the transfusion, Elena will be given medications to help with any possible side effects. During the transfusion, Elena will be hooked up to monitors and closely watched for any potential side effects, such as nausea and vomiting, headaches, an allergic reaction (shortness of breath, itching, chills), a hemolytic reaction (fever, back pain, red urine) and changes in heart rate or blood pressure.
Please pray that Elena will not experience any of these potential side effects.
Today, we will be praying through the same list we posted yesterday.
Pray that Elena will stay strong and battle through the negative side effects.
Pray that Elena's pain and other side effects will be managed.
Pray that each and every remaining leukemia cell in Elena's body has been killed by the radiation and chemo.
Pray that not a single cancer cell has survived.
Pray that the chemo and radiation has only harmed the cancer and not Elena's body or mind.
Pray that we can find joy in today, as we await tomorrow's transplant.
Pray that we will be able to find peace and rest in these days.
Pray that we hold fast to His truth - "You are the God who performs miracles." Psalm 77:14.
We pray you will be too.
In Him,
The Tates
Monday, July 23, 2012
Day - 2 Evening Edition
We are going to bed thanking God that this day
is ending better than it began!
Great is His faithfulness!
Don't stop praying!
Day - 2
We have been here a week now. Some days go by quickly, others seem to take forever. Today, we are happy to say that Elena has completed the preparatory part of this journey. We are sad to say that many negative side effects are happening.
Last night, was not rest filled and today has been difficult to say the least. We will spare you all the ugly details.
Now, we wait and pray.
Pray that Elena will stay strong and battle through the negative side effects.
Pray that Elena's pain and other side effects will be managed.
Pray that each and every remaining leukemia cell in Elena's body has been killed by the radiation and chemo.
Pray that not a single cancer cell has survived.
Pray that the chemo and radiation has only harmed the cancer and not Elena's body or mind.
Pray that we can find joy in today and Tuesday, as we await Wednesday's transplant.
Pray that we will be able to find peace and rest in these days.
Pray that we hold fast to His truth - "You are the God who performs miracles." Psalm 77:14.
Hoping you will be joining us in prayer.
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 your minds in Christ Jesus."
Philippians 4:6-7
Last night, was not rest filled and today has been difficult to say the least. We will spare you all the ugly details.
Now, we wait and pray.
Pray that Elena will stay strong and battle through the negative side effects.
Pray that Elena's pain and other side effects will be managed.
Pray that each and every remaining leukemia cell in Elena's body has been killed by the radiation and chemo.
Pray that not a single cancer cell has survived.
Pray that the chemo and radiation has only harmed the cancer and not Elena's body or mind.
Pray that we can find joy in today and Tuesday, as we await Wednesday's transplant.
Pray that we will be able to find peace and rest in these days.
Pray that we hold fast to His truth - "You are the God who performs miracles." Psalm 77:14.
Hoping you will be joining us in prayer.
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 your minds in Christ Jesus."
Philippians 4:6-7
Sunday, July 22, 2012
Day - 3
Last night, sleep seemed to evade us. We stayed up well past midnight and were awake every hour all night long either for medications, IV bag changes, or vitals. A busy night with the timing of things not lining up at all.
After hardly any sleep, Elena woke up early this morning feeling rather blah. Nothing terribly wrong - just an all over, achy, everything hurts, blah kind of feeling. Her doctors said that feeling this way is normal at this point of her preparatory regimen. Her body has been hit hard. This morning, Elena finished her 24 hour dose of Etoposide, which was immediately followed by Cytoxan. Her second dose of Cytoxan will be tomorrow morning.
Adding to the blah feeling, the facts - - -
summer is already over for us
we are not together as a family should be and we LOVE to be
(remember Liv is not allowed to visit the BMT unit at all)
no end of summer family fun
Elena can't go outside
no Friday night pizza and movie nights (it's not the same with only two of you)
back-to-school shopping with only one list
there will only be one child in this year's "first day of school" picture
never enough sleep
Praying for much needed rest tonight and continued strength to keep on keeping on.
In Him,
The Tates
“Come to me, all you who are weary and burdened, and I will give you rest."
Matthew 11:28
After hardly any sleep, Elena woke up early this morning feeling rather blah. Nothing terribly wrong - just an all over, achy, everything hurts, blah kind of feeling. Her doctors said that feeling this way is normal at this point of her preparatory regimen. Her body has been hit hard. This morning, Elena finished her 24 hour dose of Etoposide, which was immediately followed by Cytoxan. Her second dose of Cytoxan will be tomorrow morning.
Adding to the blah feeling, the facts - - -
summer is already over for us
we are not together as a family should be and we LOVE to be
(remember Liv is not allowed to visit the BMT unit at all)
no end of summer family fun
Elena can't go outside
no Friday night pizza and movie nights (it's not the same with only two of you)
back-to-school shopping with only one list
there will only be one child in this year's "first day of school" picture
never enough sleep
Praying for much needed rest tonight and continued strength to keep on keeping on.
In Him,
The Tates
“Come to me, all you who are weary and burdened, and I will give you rest."
Matthew 11:28
Saturday, July 21, 2012
Day - 4
While sitting here tonight, we realized that talking about life in Room 3206 every day might get kinda boring. You probably don't want to read about what time we wake up, every little side effect Elena experiences, and what we did to pass the time.
So, since we are stuck here for the next 25 - 40 days, we thought we'd show you our temporary home away from home.
In an earlier post, we shared how the BMT team takes every precaution necessary to keep the kids here from being exposed to germs, bacteria, mold, and basically anything that could cause harm to their compromised immune systems. One way they do this is by keeping each child isolated in the BMT unit until they are discharged. It's eerie how quiet it is and how "empty" it feels here. There are only 10 rooms and they are not always filled. The kids can't ever leave their rooms unless they are walking their laps or going to have a procedure or test.
We hope you enjoy the tour of our little space:
As another day here is ending, we have to say that the highlight of the day was being able to spend time with friends. You definitely feel less isolated and alone when you can enjoy laughing, talking and hanging out with someone who loves you no matter what!
We are grateful to have so many people in our lives who take the time to pray for us, encourage us, and love us through this time!
In Him,
The Tates
"A cheerful heart is good medicine." Proverbs 17:22a
So, since we are stuck here for the next 25 - 40 days, we thought we'd show you our temporary home away from home.
In an earlier post, we shared how the BMT team takes every precaution necessary to keep the kids here from being exposed to germs, bacteria, mold, and basically anything that could cause harm to their compromised immune systems. One way they do this is by keeping each child isolated in the BMT unit until they are discharged. It's eerie how quiet it is and how "empty" it feels here. There are only 10 rooms and they are not always filled. The kids can't ever leave their rooms unless they are walking their laps or going to have a procedure or test.
We hope you enjoy the tour of our little space:
The view from one corner
We even decorated the ceiling with
paper lanterns and starfish.
The view from the opposite corner
Bathroom door on the left
Mini kitchen (fridge and microwave courtesy of friends)
in the middle
Door to the room on the right
The view from Elena's bed
A close up of the amazing poster
that is under the TV in the picture above -
a friend made it for Elena
It is filled with scripture, jokes, and sayings.
We have fun reading something new each day!
A beautiful wind chime made for Elena
by some friends at church
It is filled with words of encouragement
and brightens the once empty corner!
No, not another bright spot in the room.
Just a snapshot of the current chemo Elena is receiving.
This is the second bag.
She has one more bag to go to finish this 24 hour dose.
This 24 hour dose will end at 9:00 in the morning.
On Sunday and Monday,
she will receive a different chemo drug.
As another day here is ending, we have to say that the highlight of the day was being able to spend time with friends. You definitely feel less isolated and alone when you can enjoy laughing, talking and hanging out with someone who loves you no matter what!
We are grateful to have so many people in our lives who take the time to pray for us, encourage us, and love us through this time!
In Him,
The Tates
"A cheerful heart is good medicine." Proverbs 17:22a
Friday, July 20, 2012
Day - 5
Happy Friday Night from Room 3206!
First, we are praising God for an answered prayer! We had a peace filled, restful, no GI issues night!!
We are also celebrating that today was Elena's last day of radiation. While we are thankful these treatments have come to an end, we will miss the two wonderful men who have taken such great care of Elena the past four days. Kevin and Colton are amazing radiation technicians. They are experts in their field, kind, compassionate, and fun. Who would ever think you would associate the word radiation with the word fun!? During each session, Kevin and Colton made Elena feel at ease and less nervous. Elena looked forward to seeing them each day. Kevin took care of us each morning and Colton took care of us in the evening. We are thankful that God placed them in our lives and we look forward to seeing them again when we are able to visit and celebrate Elena leaving the hospital.
In between our early morning, late evening radiology appointments, Elena had physical therapy, two doctor visits, rested, dealt with a few side effects, visited with her nurses, listened to music, and enjoyed a surprise visit from our friends, Shannon and Dave. They are in town for a wedding. It made Elena happy to be able to hang out with them. They even escorted her to her last radiation appointment.
Thank you for continuing to pray for Elena. Please pray for her current side effects to subside. They are dry mouth, headaches, stomach aches, not being able to really taste anything, and fatigue. Despite dealing with all of this, once again Elena completed all of her daily jobs and walked to each radiation appointment. Praise God for her strength and determination!
What's next?
Tomorrow, Elena will receive the first of three high dose chemo treatments. She will receive two different chemo drugs over the next three days. She will also receive a drug that will help protect her bladder while receiving the chemo. All drugs will be administered through her central line.
The next three days of treatment are designed to do the same thing the radiation was used for - to kill any cancer cells remaining in Elena's body and to help prepare Elena's body to receive the new, healthy blood stem cells. It will also destroy Elena's own bone marrow cells so that they will not fight off or reject the new, healthy cells. By killing these cells, there will also be more room in the bone for the new cells.
As always, please pray that these drugs will do the job they are designed to do and that any side effects will be kept to a minimum.
In Him,
The Tates
"In Him our hearts rejoice, for we trust in His holy name.
May your unfailing love be with us, Lord, even as we put our hope in you."
Psalm 33:21-22
First, we are praising God for an answered prayer! We had a peace filled, restful, no GI issues night!!
We are also celebrating that today was Elena's last day of radiation. While we are thankful these treatments have come to an end, we will miss the two wonderful men who have taken such great care of Elena the past four days. Kevin and Colton are amazing radiation technicians. They are experts in their field, kind, compassionate, and fun. Who would ever think you would associate the word radiation with the word fun!? During each session, Kevin and Colton made Elena feel at ease and less nervous. Elena looked forward to seeing them each day. Kevin took care of us each morning and Colton took care of us in the evening. We are thankful that God placed them in our lives and we look forward to seeing them again when we are able to visit and celebrate Elena leaving the hospital.
Elena and Kevin
Colton and Elena
In between our early morning, late evening radiology appointments, Elena had physical therapy, two doctor visits, rested, dealt with a few side effects, visited with her nurses, listened to music, and enjoyed a surprise visit from our friends, Shannon and Dave. They are in town for a wedding. It made Elena happy to be able to hang out with them. They even escorted her to her last radiation appointment.
Thank you for continuing to pray for Elena. Please pray for her current side effects to subside. They are dry mouth, headaches, stomach aches, not being able to really taste anything, and fatigue. Despite dealing with all of this, once again Elena completed all of her daily jobs and walked to each radiation appointment. Praise God for her strength and determination!
What's next?
Tomorrow, Elena will receive the first of three high dose chemo treatments. She will receive two different chemo drugs over the next three days. She will also receive a drug that will help protect her bladder while receiving the chemo. All drugs will be administered through her central line.
The next three days of treatment are designed to do the same thing the radiation was used for - to kill any cancer cells remaining in Elena's body and to help prepare Elena's body to receive the new, healthy blood stem cells. It will also destroy Elena's own bone marrow cells so that they will not fight off or reject the new, healthy cells. By killing these cells, there will also be more room in the bone for the new cells.
As always, please pray that these drugs will do the job they are designed to do and that any side effects will be kept to a minimum.
In Him,
The Tates
"In Him our hearts rejoice, for we trust in His holy name.
May your unfailing love be with us, Lord, even as we put our hope in you."
Psalm 33:21-22
Thursday, July 19, 2012
Day -6
Today has certainly been a different kind of day!
Overnight, Elena experienced terrible GI trouble and needed three different medications to help control the side effects and pain. After we got all of that under control, Elena went over to the regular Aflac inpatient floor and had her "conscious sedation" bone marrow aspirate. We are thankful that our prayers were answered and Elena's bone marrow aspirate this morning went well. We will not receive the results of this test. It was done only as a part of the research study protocol to help determine the new drug's ability to mobilize the leukemia cells in Elena's body.
After this procedure, Elena was sacked out! She was taken to radiation on a stretcher with respiratory and heart rates monitored. She seemed "conscious", but later this afternoon, we found out that she doesn't remember much of the day! We got back to the room around 9:00 am and Elena went right to sleep. She was very tired, a little nauseous, and had a sore throat and dry mouth. She slept until almost 4:00 pm!!
When Elena woke up, she was her bright, happy, cheerful self. We were so happy to see that!! She worked on completing her daily jobs and listened to some music. At 6:00 pm, she walked to radiation for her sixth treatment. Only two more treatments to go! Praise God!
After radiation, we enjoyed visiting with two of her fabulous nurses, doing a little more room decorating, completing all of her daily jobs, and walking some laps with a new friend in the BMT unit. Elena's appetite is still suppressed. Today she has only had some grits, a few bites of cereal, and applesauce. Her throat hurts and she says nothing tastes right.
Elena is now back to sleep. Praying for a peace filled, restful night with NO GI issues!
Please also pray for her last two radiation treatments and that the new drug is doing the job it was designed to do. Praising God that we are surrounded by Christian nurses and staff!
Thank you for praying and for not letting us fight this alone!
In Him,
The Tates
"Look to the Lord and His strength, seek His face always."
Psalm 105:4
Overnight, Elena experienced terrible GI trouble and needed three different medications to help control the side effects and pain. After we got all of that under control, Elena went over to the regular Aflac inpatient floor and had her "conscious sedation" bone marrow aspirate. We are thankful that our prayers were answered and Elena's bone marrow aspirate this morning went well. We will not receive the results of this test. It was done only as a part of the research study protocol to help determine the new drug's ability to mobilize the leukemia cells in Elena's body.
In the tunnel on the way to radiation this morning.
(Sorry for the bad cell phone picture)
After this procedure, Elena was sacked out! She was taken to radiation on a stretcher with respiratory and heart rates monitored. She seemed "conscious", but later this afternoon, we found out that she doesn't remember much of the day! We got back to the room around 9:00 am and Elena went right to sleep. She was very tired, a little nauseous, and had a sore throat and dry mouth. She slept until almost 4:00 pm!!
When Elena woke up, she was her bright, happy, cheerful self. We were so happy to see that!! She worked on completing her daily jobs and listened to some music. At 6:00 pm, she walked to radiation for her sixth treatment. Only two more treatments to go! Praise God!
After radiation, we enjoyed visiting with two of her fabulous nurses, doing a little more room decorating, completing all of her daily jobs, and walking some laps with a new friend in the BMT unit. Elena's appetite is still suppressed. Today she has only had some grits, a few bites of cereal, and applesauce. Her throat hurts and she says nothing tastes right.
Maggie and Elena
Elena and Ashley
Elena is now back to sleep. Praying for a peace filled, restful night with NO GI issues!
Please also pray for her last two radiation treatments and that the new drug is doing the job it was designed to do. Praising God that we are surrounded by Christian nurses and staff!
Thank you for praying and for not letting us fight this alone!
In Him,
The Tates
"Look to the Lord and His strength, seek His face always."
Psalm 105:4
Day -7
Another day in Room 3206 is coming to an end.
This morning, we woke up at 5:00 am for our 5:15 walk to Winship. Radiation went well and we were back in the room around 6:30. After radiation, Elena has been tired and has a headache. So, just like yesterday, we went back to sleep around 8:30 and slept until after 11:00.
Elena has also started to experience the side effects from the radiation - fatigue, nausea, dry mouth and decreased appetite. Despite this, she is still getting all of her jobs done without any complaints. This evening, she redesigned her daily jobs chart with stickers. It looks great and matches her "beach" theme room. It has been fun decorating and making the room feel more like home.
Our schedule for tomorrow will be a little different.
We will be waking up at 5:00 am again, but this time Elena will be having a bone marrow aspirate at 6:30 am and radiation will follow that. The bone marrow aspirate is a part of the research protocol and has to happen six hours after Elena is given the new "mobilizing" agent. She will receive that drug at midnight tonight. Due to logistics, Elena will not be completely sedated for the BMA. She will have what they call a "conscious sedation". Please pray that Elena will not experience any pain during the procedure and that she will be filled with peace and not worry.
Please also pray that this new drug will do its job. That it will move any remaining cancer cells out and into the bone marrow and blood stream, so that it will be entirely wiped out by the radiation and chemo to come.
Please continue to pray for the ultimate goal:
It was special to be able to spend this time with Sarah and her mom because today they were discharged to the Ronald McDonald House. Praise God that Sarah is doing so well after her stem cell transplant that she is able to make this transition! We are so very grateful that our time here at Egleston overlapped if even for a little while. Please continue to pray for Sarah and her family.
While out and about on the floor this evening, we met two new families. We all have different stories, but we are all here fighting for the same thing, a cure for our children.
Tonight, we are going to bed thankful for having great friends and for making new ones.
In Him,
The Tates
This morning, we woke up at 5:00 am for our 5:15 walk to Winship. Radiation went well and we were back in the room around 6:30. After radiation, Elena has been tired and has a headache. So, just like yesterday, we went back to sleep around 8:30 and slept until after 11:00.
Elena has also started to experience the side effects from the radiation - fatigue, nausea, dry mouth and decreased appetite. Despite this, she is still getting all of her jobs done without any complaints. This evening, she redesigned her daily jobs chart with stickers. It looks great and matches her "beach" theme room. It has been fun decorating and making the room feel more like home.
Our schedule for tomorrow will be a little different.
We will be waking up at 5:00 am again, but this time Elena will be having a bone marrow aspirate at 6:30 am and radiation will follow that. The bone marrow aspirate is a part of the research protocol and has to happen six hours after Elena is given the new "mobilizing" agent. She will receive that drug at midnight tonight. Due to logistics, Elena will not be completely sedated for the BMA. She will have what they call a "conscious sedation". Please pray that Elena will not experience any pain during the procedure and that she will be filled with peace and not worry.
Please also pray that this new drug will do its job. That it will move any remaining cancer cells out and into the bone marrow and blood stream, so that it will be entirely wiped out by the radiation and chemo to come.
Please continue to pray for the ultimate goal:
- that the BMT would be effective in defeating leukemia once and for all and bring complete healing to Elena
- that Elena would be protected from the possible long-term side effects of this treatment that would be harmful to her
It was special to be able to spend this time with Sarah and her mom because today they were discharged to the Ronald McDonald House. Praise God that Sarah is doing so well after her stem cell transplant that she is able to make this transition! We are so very grateful that our time here at Egleston overlapped if even for a little while. Please continue to pray for Sarah and her family.
While out and about on the floor this evening, we met two new families. We all have different stories, but we are all here fighting for the same thing, a cure for our children.
Tonight, we are going to bed thankful for having great friends and for making new ones.
In Him,
The Tates
Tuesday, July 17, 2012
Day -8
In an earlier post, we described the transplant timeline. Today is Day -8 on the transplant timeline. The days before transplant are the negative days. Transplant is Day 0, and then the first 100+ days after transplant are counted. We are going to follow this timeline as we post.
The past 24 hours here have been filled with answered prayers. We are counting our blessings.
Overall, we had a good night.
Radiation went well.
We were able to get plenty of rest after radiation.
Elena is eating well and getting all of her jobs done.
We walked laps twice with our friends, Heather and Sarah.
The staff here is amazing.
Many praises and things to be thankful for!
After a 5:00 am wake-up call, we walked underground to Winship. Thank you to those of you who told us you were up "walking with us in prayer". Even in the tunnel, we knew we weren't alone!
Currently, Elena is receiving IV fluids and another IV medication, an anti-coagulant. This medication is being used as a precaution to help keep Elena's blood thin and flowing since Elena is considered high risk for veno-occlusive disease (VOD) of the liver. She had this disease in April of 2010 and her liver appears irritated heading into transplant. They are also giving her two oral medications to help strengthen her liver. Please pray that these meds will do their job and that Elena will NOT get VOD.
One wonderful part of our day was meeting all of the members of Elena's medical team. Each staff member has been friendly, positive, and upbeat. They are all so very knowledgeable in their area of expertise and have taken the time to clearly explain things.
Today, between the hours of 12:00 and 5:00 pm, we met two doctors, the nurse practitioner, the nutritionist, the respiratory therapist, the physical therapist, the school teacher, and the child life specialist. It has been a little busy around here this afternoon!
We have also been blessed with two wonderful nurses. Each one has taken their time to get to know Elena and listen to her. There are genuinely interested in her as a person and not only as a patient.
Before going into radiation today, Maggie, our night nurse, asked Elena what was one thing she was thankful for. Elena was already scared and nervous about radiation today. She quickly responded that she was thankful that both of us could be with her for her first radiation session. Maggie wanted to make sure Elena knew that no matter what is going on, you always have something to be thankful for. Later in the morning, she left a note for Elena . Part of it said "Cultivating gratitude for what is and having faith in what's to come...that is what joy is all about. Choose joy every single day and you will be home before you know it."
Praying that tonight, you have something to be thankful for and that you choose joy.
We are!
In Him,
The Tates
The past 24 hours here have been filled with answered prayers. We are counting our blessings.
Overall, we had a good night.
Radiation went well.
We were able to get plenty of rest after radiation.
Elena is eating well and getting all of her jobs done.
We walked laps twice with our friends, Heather and Sarah.
The staff here is amazing.
Many praises and things to be thankful for!
After a 5:00 am wake-up call, we walked underground to Winship. Thank you to those of you who told us you were up "walking with us in prayer". Even in the tunnel, we knew we weren't alone!
On our long walk this morning.
We will do it again at 7:15 tonight.
Elena in place ready to go.
After about 15 minutes on this side, she rolls over
and then does another 15 minutes on the other side.
The sign on the door to the treatment room.
The door is about three feet thick.
When we returned from radiation,
this was the view from the little window
in our hospital room.
God's love shining brightly.
Currently, Elena is receiving IV fluids and another IV medication, an anti-coagulant. This medication is being used as a precaution to help keep Elena's blood thin and flowing since Elena is considered high risk for veno-occlusive disease (VOD) of the liver. She had this disease in April of 2010 and her liver appears irritated heading into transplant. They are also giving her two oral medications to help strengthen her liver. Please pray that these meds will do their job and that Elena will NOT get VOD.
One wonderful part of our day was meeting all of the members of Elena's medical team. Each staff member has been friendly, positive, and upbeat. They are all so very knowledgeable in their area of expertise and have taken the time to clearly explain things.
Today, between the hours of 12:00 and 5:00 pm, we met two doctors, the nurse practitioner, the nutritionist, the respiratory therapist, the physical therapist, the school teacher, and the child life specialist. It has been a little busy around here this afternoon!
We have also been blessed with two wonderful nurses. Each one has taken their time to get to know Elena and listen to her. There are genuinely interested in her as a person and not only as a patient.
Before going into radiation today, Maggie, our night nurse, asked Elena what was one thing she was thankful for. Elena was already scared and nervous about radiation today. She quickly responded that she was thankful that both of us could be with her for her first radiation session. Maggie wanted to make sure Elena knew that no matter what is going on, you always have something to be thankful for. Later in the morning, she left a note for Elena . Part of it said "Cultivating gratitude for what is and having faith in what's to come...that is what joy is all about. Choose joy every single day and you will be home before you know it."
Praying that tonight, you have something to be thankful for and that you choose joy.
We are!
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."
Lamentations 3:22-23
Monday, July 16, 2012
Day -9
It's official! Elena has been admitted into the Bone Marrow Transplant unit at Egleston. We found out around 5:30 this evening, as we waited anxiously for the results of Elena's liver enzyme test, that her numbers have gone down sightly and we are able to proceed as planned. Praise God!
So, the rest of our evening will be spent unloading the car, unpacking, and settling in our room.
The only thing scheduled for tomorrow, Day -8, is two sessions of radiation. The first one at 5:30 am! If you are an early riser, pray for us as our nurse will be escorting us through tunnels to the Winship Cancer Institute at Emory at 5:15 am.
So thankful for all of the prayers! Keep them coming!
In Him,
The Tates
Ending tonight with verses from our friend Stacee.
This morning she told us that this was her prayer for us today:
"May He give you the desires of your heart and make all your plans succeed. We will shout for joy when you are victorious and will lift our banners in the name of God. May the Lord grant all your requests."
Psalm 20:4-5
We are claiming these verses throughout Elena's BMT!
So, the rest of our evening will be spent unloading the car, unpacking, and settling in our room.
The only thing scheduled for tomorrow, Day -8, is two sessions of radiation. The first one at 5:30 am! If you are an early riser, pray for us as our nurse will be escorting us through tunnels to the Winship Cancer Institute at Emory at 5:15 am.
So thankful for all of the prayers! Keep them coming!
In Him,
The Tates
Ending tonight with verses from our friend Stacee.
This morning she told us that this was her prayer for us today:
"May He give you the desires of your heart and make all your plans succeed. We will shout for joy when you are victorious and will lift our banners in the name of God. May the Lord grant all your requests."
Psalm 20:4-5
We are claiming these verses throughout Elena's BMT!
We Are Loved
We are feeling the love and counting our blessings as our Five Fab Days are coming to a close.
These days have filled our hearts with joy. God answered our prayers by giving us fun filled days that passed by slowly. We are blessed to have so many people praying for us.
Thank you for the calls, blog comments, texts, cards, and emails telling us you care, you believe, and you are there for us. These acts of love mean so much to us! They let us know that we are not alone and they are reminders of God's great love for each of us.
This weekend we continued our fabulous days of fun with the help from friends. They gave us the gifts of rest, laughter, love, friendship, and more.
Friday night, we enjoyed a wonderful date night - homemade appetizer, dinner and dessert provided!
Saturday, we spent the afternoon and evening at the lake with the Knaack family. We enjoyed a great boat ride, dinner, sunset, and laugh-til-you're-crying fun.
Sunday after church, we went to see Ice Age and then had a cook out with some friends.
Little did we know that there was a special surprise planned...around 9:00 pm the doorbell rang. When we went to the door, there was no one there.
But this is what the yard looked like:
Today, we will enter the hospital armed with the full armor of God - knowing we have an army standing with us, knowing we are loved, believing in a cure, and trusting our Lord and Savior.
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....Therefore put on the full armor of God, so that when the day of evil comes, you may be able to stand your ground, and after you have done everything, to stand. Stand firm then, with the belt of truth buckled around your waist, with the breastplate of righteousness in place, and with your feet fitted with the readiness that comes from the gospel of peace. In addition to all this, take up the shield of faith, with which you can extinguish all the flaming arrows of the evil one. Take the helmet of salvation and the sword of the Spirit, which is the word of God." Ephesians 6:10, 11, 13-17
These days have filled our hearts with joy. God answered our prayers by giving us fun filled days that passed by slowly. We are blessed to have so many people praying for us.
Thank you for the calls, blog comments, texts, cards, and emails telling us you care, you believe, and you are there for us. These acts of love mean so much to us! They let us know that we are not alone and they are reminders of God's great love for each of us.
This weekend we continued our fabulous days of fun with the help from friends. They gave us the gifts of rest, laughter, love, friendship, and more.
Friday night, we enjoyed a wonderful date night - homemade appetizer, dinner and dessert provided!
Saturday, we spent the afternoon and evening at the lake with the Knaack family. We enjoyed a great boat ride, dinner, sunset, and laugh-til-you're-crying fun.
Sunday after church, we went to see Ice Age and then had a cook out with some friends.
Little did we know that there was a special surprise planned...around 9:00 pm the doorbell rang. When we went to the door, there was no one there.
But this is what the yard looked like:
Friends had covered our yard in well wishes and scripture! Amazing!
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....Therefore put on the full armor of God, so that when the day of evil comes, you may be able to stand your ground, and after you have done everything, to stand. Stand firm then, with the belt of truth buckled around your waist, with the breastplate of righteousness in place, and with your feet fitted with the readiness that comes from the gospel of peace. In addition to all this, take up the shield of faith, with which you can extinguish all the flaming arrows of the evil one. Take the helmet of salvation and the sword of the Spirit, which is the word of God." Ephesians 6:10, 11, 13-17
Saturday, July 14, 2012
More Information about Elena's Time in the Hospital
**** Important prayer request ****
Elena's repeat liver enzyme test from Wednesday remained elevated. The test will be repeated when she is admitted on Monday. PLEASE PRAY that Elena's liver enzymes will go DOWN! They are close to four times higher than normal. IF they become higher than four times, Elena WILL NOT be able to participate in the transplant study! We have come too far to not be able to proceed as planned! PLEASE PRAY!
We are enjoying every moment of these days leading up to Elena's transplant! Media Day was fun, but time consuming : ) We are also 90% packed for the hospital. Today will be spent outside enjoying the sunshine and fresh air.
Thank you for encouraging us, praying for us, and loving us!!
Here's a little more information about what will happen once Elena is admitted.
The preparatory regimen will completely wipe out Elena's immune system. It is designed to. With an immune system that is so compromised, the BMT team takes every extra precaution to keep the kids from being exposed to things, as even a cold could become serious to them. For these reasons, when Elena and the other kids enter the unit, they don’t leave it AT ALL until they are discharged. There will be no getting out of the room to check out new things at the gift shop or to walk through the beautiful garden. During all our other hospital stays, we have always enjoyed being able to get out of the room, so this will be hard. Elena will be able to look out of a window, but she will not step foot outside in fresh air and sunshine for 4-6 weeks. Please pray that she will not feel trapped and that she won’t miss being outside too much.
Another precaution the BMT team takes in keeping the kids well is by requiring them to do daily jobs. Each job seems simple, but when a child is experiencing the side effects from chemo and radiation, the jobs become more like chores.
Elena's daily jobs will include:
*daily baths with special wipes - to keep germs off her skin and lotions to soothe red, dry, irritated skin
*mouth care (brushing and rinses) at least 4 times a day- to help prevent infection by cutting down on the germs that could enter the bloodstream and to help with mouth sores
*using an incentive spirometer multiple times each day - this is exercise for Elena's lungs to help prevent pneumonia
*walking a minimum of 10 laps on the hall everyday - exercise for the body to help strengthen the lungs, bones, muscles, and heart and also to help improve the movement of fluids in the body
Elena will have to wear a mask when she leaves her room to walk laps on the hall and when she leaves the floor for any tests of radiation.
Each day we will also be measuring Elena's fluid input and output, her weight every 12 hours, and her calories. As mouth sores and mucositis develop and appetite decreases, knowing these things will be critical in order to monitor how Elena's body is handling everything.
Thank you for praying in advance for Elena to be able to preform her daily jobs each day, for the jobs to be effective in preventing any major complications, and that Elena will have all the mental, physical, and spiritual strength she needs every moment, every day.
In Him,
The Tates
Ephesians 3:14-20
"For this reason I kneel before the Father, from whom every family in heaven and on earth derives its name. I pray that out of His glorious riches He may strengthen (Elena) with power through His Spirit in (her) inner being, so that Christ may dwell in (her) heart through faith. And I pray that (Elena), being rooted and established in love, may have power, together with all the Lord’s holy people, to grasp how wide and long and high and deep is the love of Christ, and to know this love that surpasses knowledge —that (she) may be filled to the measure of all the fullness of God. Now to Him who is able to do immeasurably more than all we ask or imagine, according to His power that is at work within us."
Elena's repeat liver enzyme test from Wednesday remained elevated. The test will be repeated when she is admitted on Monday. PLEASE PRAY that Elena's liver enzymes will go DOWN! They are close to four times higher than normal. IF they become higher than four times, Elena WILL NOT be able to participate in the transplant study! We have come too far to not be able to proceed as planned! PLEASE PRAY!
We are enjoying every moment of these days leading up to Elena's transplant! Media Day was fun, but time consuming : ) We are also 90% packed for the hospital. Today will be spent outside enjoying the sunshine and fresh air.
Thank you for encouraging us, praying for us, and loving us!!
Here's a little more information about what will happen once Elena is admitted.
The preparatory regimen will completely wipe out Elena's immune system. It is designed to. With an immune system that is so compromised, the BMT team takes every extra precaution to keep the kids from being exposed to things, as even a cold could become serious to them. For these reasons, when Elena and the other kids enter the unit, they don’t leave it AT ALL until they are discharged. There will be no getting out of the room to check out new things at the gift shop or to walk through the beautiful garden. During all our other hospital stays, we have always enjoyed being able to get out of the room, so this will be hard. Elena will be able to look out of a window, but she will not step foot outside in fresh air and sunshine for 4-6 weeks. Please pray that she will not feel trapped and that she won’t miss being outside too much.
Another precaution the BMT team takes in keeping the kids well is by requiring them to do daily jobs. Each job seems simple, but when a child is experiencing the side effects from chemo and radiation, the jobs become more like chores.
Elena's daily jobs will include:
*daily baths with special wipes - to keep germs off her skin and lotions to soothe red, dry, irritated skin
*mouth care (brushing and rinses) at least 4 times a day- to help prevent infection by cutting down on the germs that could enter the bloodstream and to help with mouth sores
*using an incentive spirometer multiple times each day - this is exercise for Elena's lungs to help prevent pneumonia
*walking a minimum of 10 laps on the hall everyday - exercise for the body to help strengthen the lungs, bones, muscles, and heart and also to help improve the movement of fluids in the body
Elena will have to wear a mask when she leaves her room to walk laps on the hall and when she leaves the floor for any tests of radiation.
Each day we will also be measuring Elena's fluid input and output, her weight every 12 hours, and her calories. As mouth sores and mucositis develop and appetite decreases, knowing these things will be critical in order to monitor how Elena's body is handling everything.
Thank you for praying in advance for Elena to be able to preform her daily jobs each day, for the jobs to be effective in preventing any major complications, and that Elena will have all the mental, physical, and spiritual strength she needs every moment, every day.
In Him,
The Tates
Ephesians 3:14-20
"For this reason I kneel before the Father, from whom every family in heaven and on earth derives its name. I pray that out of His glorious riches He may strengthen (Elena) with power through His Spirit in (her) inner being, so that Christ may dwell in (her) heart through faith. And I pray that (Elena), being rooted and established in love, may have power, together with all the Lord’s holy people, to grasp how wide and long and high and deep is the love of Christ, and to know this love that surpasses knowledge —that (she) may be filled to the measure of all the fullness of God. Now to Him who is able to do immeasurably more than all we ask or imagine, according to His power that is at work within us."
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