Monday, August 27, 2012

Holding Our Arms

Shortly after Esther was diagnosed a couple from our church wrote us an email that I've read several times.  We were blessed by their hearts for our lives and the empathy in their words.  One of the things they said is that they are here, to hold up our arms.

Not the same image, but similar.
I instantly remembered an image from a Sunday school lesson I taught a while back.  I've always loved the picture.  Moses had burden to bear, but he couldn't do it himself.  Two men accompanied Moses up a hill to survey a battle below.  They knew no one else could carry the weight of the burden, but they could help.  They would support Moses.  They would give him a place to sit and they would come close to him, one on either side, and hold up his arms. 

In Exodus 17 the Israelites were in a battle that began early in the morning.  Moses, his brother Aaron, and another man, Hur, climbed a hill to watch the battle.  Moses told the leader of his army that he would stand at the top of the hill with the staff of God.  Exodus 17:11-12 says, "Whenever Moses held up his hand, Israel prevailed, and whenever he lowered his hand, Amalek prevailed. But Moses' hands grew weary, so they took a stone and put it under him, and he sat on it, while Aaron and Hur held up his hands, one on one side, and the other on the other side. So his hands were steady until the going down of the sun."

I imagine when Moses first climbed the hill and surveyed the battle going on before him, he was not naive to the potential for loss in the valley below.  His friends, his family, the people he was leading, were fighting with swords, some would die. He also knew that his help, and the help of His people, comes only from the Lord.  He lifted his arms, held the wooden staff high, seeking the Lord's blessing over the battle, his arms were strong, steady.  After a while his arms began to shake, sweat beading upon his brow, he was reminded of the frailty of human strength. 

As the staff lowered, the enemy began to prevail.  He saw his people being overtaken, killed. This was a burden he could not bear alone.  His friends gave him a rock to sit upon, drew intimately close, and held up his arms.  What I love about this is the tenderness in Aaron & Hur's care.  Moses wasn't the one who said he needed a rock to sit up.  He was focused on the battle, on holding up his arms.  He wasn't looking around for the solution.  Those men saw his need and just responded.  They rolled up a boulder and got right next to him.  He didn't shoo them away insisting he could manage. Moses received it.

The frailty of human strength is vivid as the adrenaline has worn off, and we are tired.  Our arms are weak, and it's not yet noon.  We would absolutely lose the battle without people coming right next to us and holding our arms.  So many have held up our arms, surveyed our circumstances and responded...surprise fundraisers, eager friends who have completely stepped in to take responsibilities I could never manage.  Words of encouragement and snippets of truth have been salve for dry lips.  Generous gifts and acts of service are a place for us to sit and rest.  We are blessed to have family and friends willing to come next to us and hold up our arms.  We praise the Lord for your lives, your hearts and the arms holding us up.

We've been home for 10 days.  That is the longest stretch of time we've been together since early June.  It has been both refreshing and unreal.  Our lives are different now, and it feels strange to just pick up the old routine.  The reality of the emotional and mental exhaustion has become acute, but it has been unifying to just be together. 
We're still battling colds.  Anthony and Rourke are yet to be sick.  A praise or worry that it just hasn't hit them yet?  Esther's ANC was over 10,000 today, so once again, God was so kind in arming Esther with stem cells to fight off a cold.  She's been having some bad bloody noses, and her platelets are low.  We'll check on Wednesday to see if she needs a platelet transfusion.   

We're looking forward to Anthony's brother, Kyle, to arrive on Wednesday and the older three kids will have their first day of our home school program, Classical Conversations, on Friday.  Please pray we are all healthy to be able to go.  I think we will all grieve if they have to miss out on their first day, they are so looking forward to it.  We even started some school today.  It was completely unorganized, but the kids didn't care.  All of those planning books/charts are really just a way for me to think I'm actually in control... They were happy to write their numbers, do some math, read and discuss a poem from Rourke's writing lesson.  

As I type this I am humbled by the ways our arms have been held.  Today would not have been possible if I had to manage everything on my own.  Our laundry was picked up dirty and returned neatly folded and clean, our house is being regularly cleaned and meals are a way to give us a few more hours to just be with our kids. Our weary arms are thankful to rest in your strength and love. 

Thursday, August 23, 2012


Esther's blood work came back pretty amazing today.  Her ANC was over 25,000.  What a huge relief! 

It makes sense...she had a lot of extra stem cells in her body and their job is to turn into red & white blood cells and platelets.  They did their job.  This is definitely the round to get a cold.  At the same time I worry...did this round of chemo do anything to her tumor?  Where will this cold hide in my house?  When is it safe to just go on a cleaning spree? 

Tonight Rourke said he wants to be an inventor.  He's going to invent a vitamin everyone takes that will not allow tumors to grow and just makes you lose 1/8 inch of hair.  Then he'll invent race cars and rocket ships.  Maybe he'll change his name to Stark something or other :). 

We are all hanging in there.  Zinnia is totally milking her scruffy voice asking for medicine.  I feel like God is working out a lesson for me, revealing Himself anew.  There is a strange oscillation between sorrow & grief and hope & peace.  In church last Sunday we sang a new song.  A line in it said "your will, your way."  I wrote to a friend who found out this week two of her three children have a frightening heart condition that has caused her heath scares and took her mom's life...
We sang a song in church this week...something about "Your will, Your way." I was struck with how superficial that has been most of my walk. That it has always been outward, doing, not and inward surrender to circumstances completely of His control and completely out of mine. That I've striven to conform my life to God's ways and standards, all very good things, but that it has always been a bit of my own doing, my striving. In circumstances where my striving is in vain, "Your will, Your way" takes on a whole new meaning.
Following Christ is not a laid out plan with all of the rules & regs laid out.  It's surrender to One who is greater, whose kind wisdom is the way.  Whose way is love.  This is both daily in our choices and much farther reaching within out hearts.  Only in that surrender is there peace.  I've learned again and again that I am not good at that heart surrender, God has continually put me in circumstances that bring surrender.  I can either surrender and fall into His grace, His arms.  I can surrender to bitterness, anger, entitlement, pride.  I'd much rather fall in to His arms.  He is there to catch me despite my kicking, screaming, muddy hair and tattered clothes, His embrace is loving regardless of me. Thank you, Jesus.  God has been kind to continually show me that as much as I think my heart has drifted, He'll never let me go.  His arms are steady, waiting.  He is kind.  He is kind.  Would my heart be eager to rest in His will, in His way?  

Esther's ANC is amazing this week.  I have a timid hope we'll escape this round of chemo with no inpatient time.  That is completely of His control. Although, the remaining neupagen, the medicine that causes her body to create stem cells, in my fridge is tempting...

Wednesday, August 22, 2012

Little Bites, Small Drinks

The last few days have been pretty quiet and we are still home! The kids, including Esther, have colds. When we saw the doctor on Monday he said because her counts were so high from the stem cell growth factor, he said this is the round to get a cold. It's still scary because a chest cold can turn into pneumonia. We need to be extra sensitive to fevers and her breathing. She seemed to be better today. Please pray she would get well quickly.

Monday she did great! She didn't cry or fuss a bit about her shot. The hours leading up to the shot were harder and she was really scared and fussing, but when it came to it, she was so brave! The drive home was probably the worst nausea she's had and an accident on I-25 added an hour and a half to our drive.

The nausea is still strong for Esther. The last couple of days she's tried to eat little bites and take small drinks. She is hungry and wants to eat, but not much has stayed down. It's sad to see her losing weight. From her discharge on Saturday to her check up on Monday she'd lost almost 2 pounds. Please pray for her to be able to eat and gain back some of the weight she's lost. The doctor gave her a prescription for an appetite stimulant to try. We'll see, she does want to eat, it's just a matter of keeping it in her tummy long enough to do any good. The next step is a med in the steroid family, but I really, really want to avoid steroids.

Her gag reflex is very sensitive, so I wonder if she's really nauseas or if she is vomiting because of a funny bite. Pray for wisdom as we feed her and creativity for high calorie foods that are easily digested. Suggestions are welcome!

All in all, we're doing alright. We're so thankful Aunt Margarita was able to be here again last week. The kids had a great time with her. They had Taco Tuesday, went to a berry picking excursion with some friends from the twins club, watched sunsets, toured the CSU flower gardens, played at the Fossil Creek Splash park, practiced speaking Spanish, and we enjoyed A.MAZ.ING. fresh salsa she made from our garden fresh ingredients. If you need some veggies, stop by! We've got more than we'll be able to eat or manage. Kale, cucumbers, peppers, fairy tale eggplant, tomatillos, and tomatoes are in abundance. I'm serious...come by!

Here's some pictures from their week .

With our friends Miss M and Miss S at the berry picking farm.


Rourke is exersicing every amount of self control in his body to not eat his berries. They also made beeswax candles, watched a movie about bees, and went on a hayride. They also brought Esther an adorable hat home from the farm.



Auntie Margarita makes everyone smile! I love this picture. Uncle Kyle's sweeheart Emily, and I have a similar picture with ribs.


At the CSU flower gardents. My guess is that the kids are saying "Te Amo!" That was the catch phrase of the week!


Zinnia with the zinnias. I think the blonde flower with the blue flip flops is the cutest of the bunch.
Zinnia and Aunt Margarita watched the sunset or sat on the front step each night. Zinnia would ask each night to "sit outside." Very sweet.
Rourke and Lydia worked hard to de-germ the "blue car" before Esther came home.


Waiting to take Esther home Saturday afternoon. When Anthony and Rourke arrived, Rourke went straight to Esther's bed, squatted down to her level saying, "Hi Esther! I missed you!" He is such a sweet brother and pours love over his sister. After Anthony laid down, he did not hesistate to kick off his shoes and crawl right up next to his littlest sister. Often when people comment about Rourke being the only boy I am quick to say that he will be such a good husband someday. If he dodes on his bride the way he dodes on his sister, she will be a blessed woman indeed.

Sunday, August 19, 2012

The Weekend

Esther was able to come home yesterday! She has been doing pretty well with just a few throw ups. Tonight she even ate two bowls of "plain noodles" and about 1/2 cup of milk. We were reminded of those newborn days as we woke at 1am and 3am to give her medicine, but it did seem to help.

We have an appointment in Denver tomorrow for her growth factor shot to help her body make new white blood cells. There is a really stupid insurance rule (for all insurance policies) that you can not give the shot inpatient or on the day of discharge. They don't do it on Sundays, so we have to come back Monday. She had a lot of white blood cells left over from the growth factor for her stem cell collection, so its not a big deal. When we checked out of the hospital her ANC was over 10,000.

I just wrote "checked out." It is an odd feeling when the hospital rooms starts to feel like a normal environment...I can navigate in the dark and even had a dream about how I would redecorate. I think we've spend entirely too much time there.

This is what Esther wanted to do today. It was so cute, she asked to rider her bike and Rourke got out and ready for her while she got her shoes on. Pretty fun.

And a video if you can handle the bad camera skills...the iPad is a little awkward and the camera battery is MIA, still cute. All the kids enjoyed their bikes today, breakfast cooked by daddy, smoothies for lunch, and delicious spagetti for dinner.



Saturday, August 18, 2012

Hope On The Other Side

We are headed home later today.  I'm a bit nervous to see how Esther's nausea goes without IV anti-nausea meds.  She threw up a lot yesterday, but was vomit free overnight until early this morning.  I'm putting into practice all of the tricks that helped me with pregnancy nausea...bagels, carnation instant breakfast, avoid water first thing in the morning, and I'm eager to get home to our ginger extract.  I forgot it this week.  It will be good to be home. 

Our friends, The Messers, have brought me a lot of courage and hope over the last couple of years and especially since Esther has been diagnosed.  Liz has been a constant pursuer and encourager of me.  Joe and Liz have walked through a couple of journeys that could crush any of us.  Their daughter, Micah, was born very early and spent two months in the NICU.  I'm sure Liz felt many of the same emotions I've felt along this journey, teetering between hope and trust and the real fear of not knowing if her little girl would survive. Then last year their son, Liam, went to be with the Lord, and the Messers were told they would not be able to have any more children.

Through all of this, Joe and Liz have been able to remain hopeful and have been encouragers. They were crushed but not destroyed and the hurt will always linger, but will not overwhelm.  Their struggle has been a comfort to me, that no matter what happens to Esther, there is hope on the other side.  They are wonderful parents and are eager to have more children, so they are pursuing adoption.  They are also doing an amazing fundraiser where you can win one of several really amazing prizes. 


Please take a minute to read their story and take a look at the giveaways you can win.  It's simple, for every $5 donation you get an entry toward the giveaway of your choice.  They are GOOD too, entire themed collections of amazing things, mostly handmade, for little girls & boys, your home, your family, and your style. You have until August 26th to participate in their adoption fundraiser. 

Thursday, August 16, 2012

The Weight of Reality

The last couple days with Esther have been busy.  She is receiving around the clock anti-nausea meds to attempt to prevent the severe vomiting cisplatin can cause.  We've had wonderful nurses who have been coming in every couple of hours to administer a med through her IV to try to stay on top of the nausea.

Esther's favorite name is "Carla."  She has several dolls named "Carla" and even bestowed the name upon her chicken.  For the last two days, and once a few weeks ago, Esther's nurse has been Carla.  She's a sweet Brazilian woman who has really been on top of Esther's care.  She's given me a ton of tips to helping Esther cope.  She even convinced Esther to take a bath today, and she loved it.  Tonight she stayed a little after her shift to give Esther some meds just to keep her on schedule because Esther's night nurse was busy with a very sad little baby.

The 24 hour anti-nausea regimen has worked pretty well with only a few throw ups.  Tonight has been harder, she's been sick about once an hour.  They say the most severe nausea hits about 3 days after the chemo is given.  Today was the third day. 

Tuesday night I had just laid down to sleep and Esther began to throw up.  She was okay, but still laying on her back and choking a bit.  A wave of reality hit me as I jumped out of bed to help her sit up.  I think it's the first time I've felt really angry about all of this.  My sweet daughter was choking on vomit and having a hard time sitting up because she's taking two anti-nausea meds that cause drowsiness.  I found myself hating this reality.

Wednesday, Thomas, Emily, Theo, and Thomas' cousin, Tim, stopped by to say hi.  Emily snapped a precious photo of Thomas and Esther together.  She posted it on their blog and I just cried at the image of these two children, smiling.  Walking this road, daily. Their lives have been intertwined not by home school alone, but by cancer, it feels so unfair.  But as I read on a blog of a mother of twins in NY, "No, it's not fair.  Would it be more fair for some other girl to be faced with this situation?" 

In His kindness, God reminded me that many things are unfair.  His own son's journey was not fair.  Jesus' sacrifice was the most unjust.  He has scattered soft moss and fragrant blossoms along our journeys.  That He's given us friends who love Him and can encourage and remind us where to hope as we are right along the same path.  Aly's treatment is finished.  She has a ton of follow up tests/scans, but she is finished and in just a few days a family will be reunited after 6 months.  Praise Him!  He's given us family and friends who hold up our tired arms when our strength is not enough.  We are so needy.

As I was talking with Carla, trying to communicate my gratitude for her care for Esther, she mentioned how she appreciates when families ask questions and are involved because when they don't communicate or jump in with Esther's care she worries they don't understand the danger in which their child is living.  That cancer will kill them.  Treatment is nearly as grave.  Many, many families on this journey do not have someone to walk with or people to hold them up in utter weakness.  We are thankful.

The weight is heavy. Treatment is not a guarantee of recovery and is an awful journey.  A song that has blessed me the last few weeks is 10,000 Reasons (Bless the Lord) by Matt Redmond.  A reminder that there are 10,000 reasons (and more) for my heart to discover God's goodness.

Whatever may pass, and whatever lies before me
Let me be singing when the evening comes

Bless the Lord, O my soul
O my soul
Worship His holy name
Sing like never before
O my soul
I'll worship Your holy name

Tuesday, August 14, 2012

Round 3 Begins

Esther was SO BRAVE!  She didn't fuss or cry or even wiggle when the nurse accessed her port.  Now the goal is to lose some of the fear about taking it out.

It was a long day and hospital time has a new meaning.  We arrived at 9:30am, but didn't start chemo until 4:45pm.  This chemo needs an hour of fluids beforehand, two hours of chemo, and then six hours of fluids to follow.  She has to pee at least every 4 hours, so that's annoying.  Pray for rest.  Also, I'm feeling a little tickle in my throat and it's my peak allergy season, so who knows.  Pray that I would stay healthy.

The nice part about the day is that Anthony came down with us.  He worked a bit, we all ate lunch downstairs during our waiting time, and it was just nice for him to meet some of the new friends we've made here.  Esther is apparently famous on the infusion floor.  As we walked by one of the BMT nurses told her "hi" and another nurse said, "Wait, is this the Esther.  I keep hearing about how cute that little Esther is."  She's pretty cute.

This week as we do chemo, pray for Esther to not be too sick and for her nausea meds to be enough.  Also, I'm hoping to do some school planning, so please pray for wisdom and peace as I think about schooling the other kids amidst chemo craziness.  Anthony's Aunt Margarita is back for a visit, so pray for the two of them to have fun with the other kiddos this week.

Overall, we're peaceful and prepared for the week and really thankful to be on the 8th floor again.  It's far more peaceful, bright, and quiet up here.  The best part is that you can see out the window.  Tonight's sunset was pretty incredible. 

Saturday, August 11, 2012

Come, Without Price.

"Come to Me. Come to Me. Come to Me. This is My continual invitation to you, proclaimed in holy whispers." ~Sarah Young, Jesus Calling, 234

These are the opening words from today's entry in a devotional a friend passed on to me. This was inspired by Revelation 22:17 "The Spirit and the Bride say, "Come." And the let the one who hears say, "Come." And let the one who is thirsty come; let the one who desires take the water without price." This was God's gentle beckon to me this morning, His whisper to each of us. There is a measure of weariness, of trial, of struggle in each of our lives. God's answer is the same, "Come." 

"Only let each person lead the life that the Lord has assigned to him, 
and to which God has called him."  1 Corinthians 7:17

Whether the path is thick with fallen trees and thistles or fragrant with dew resting on soft, cool moss, this is the life the Lord has assigned, the life to which He has called. It's easy to wonder why or what we did to cause the trials of this life, to take the full credit for our success. It's not about that. We should be faithful and are held accountable for our actions, but God has assigned and called us each of us to our own path, to it's beauty and challenge. What are we do to? Come. 

"Oh, how abundant is your goodness
which you have stored up for those who fear you 
and worked for those who take refuge in you
in this sight of the children of mankind! 
 In the cover of your presence you hide them." 
 Ps 31:19-20

Over the last couple of weeks, it's been harder to get time with my Bible, to sit in the presence of the Lord. I've struggled to hold to the goodness of the Lord. My refuge has been sought out amongst circumstances. God reminded me to come, to see his ABUNDANT goodness. I will see that goodness stored up for ME when I hide myself in God's presence, to take my refuge in Him. It is there, always...

"Jesus said to them, 'I am the bread of life; WHOEVER comes to me shall not hunger, and whoever believes in me shall never thirst. But I said to you that you have seen me & yet do not believe. But I said to you that you have seen me & yet do not believe. All that the Father gives me will come to me, and whoever comes to me I will NEVER cast out. For I have come down from heaven, not to do my own will, but the will of him who sent me, that I should lose nothing of all that he has given me, but raise it up on the last day. For this is the will of my Father, that everyone who looks on the Son and believes in him should have eternal life, and I will raise him up on the last day.'"  
John 6:35-40

This life will be weary, it will have beauty. He will never cast us out, Jesus has come to do the Father's lose nothing, to raise it up. Today I was encouraged that no matter how awful this assignment may be and even in the weariness of daily life before cancer, God has called us to it. He does not leave any of us alone, His refuge is ever waiting to cover us secure and He will NEVER cast out. Today, and when Esther's journey is complete, and when these days are finished, I will come. There is no price, it is not mine to pay. There is no need to earn a spot in His abundant goodness. Christ paid the price so I can come. He bids us, "Come."

Thursday, August 9, 2012

A little fundraiser

Today has been a nice, low key day. We watched some rhythmic gymnastics this morning. The girls tried to strut in like the gymnasts strut onto the floor, Frannie's got the shoulder swagger for it. Zinnia had the best face. The thing about the olympics is they need to put the regular gymnastics and swimming the second's just not as exciting to watch syncronized swimming and rhythimic gymnastics after the excitement of perfect vaults and hundreth of a second races in the water.


Frannie has a Lil' Expressions
bag with her name and a character
that looks like her.
A friend of ours is hosting a fundraiser for Esther's care. Such a sweet gesture. She sells 31 bags & gifts and they have a fundraising option. We have lots of these bags and I really like them. A couple of my favorites are the thermal tote & the Large Utility Tote. The thermal tote is great for an insulated lunch bag that has a lot of room for a small bag. The large utility tote is my very is a big, strong bag, but it folds flat and is easy to store. The kids each have an all-in-one organizer that is their library bag and the girls all have a cinch sac with their names embroidered on them. Several friends have the Skirt Purse. The fun thing about the purse is that it has lots of covers you can change, but keep the inside bag intact.


Lydia's Lil' Expressions Bag with her name
Anyway, Shanole already hosted one of these fundraisers, but there were a few people who wanted to order but didn't get a chance and we thought this was a good way to let others join the fun.

So, if you're looking for some fun gifts or something for yourself, take a look. There is a special this month. For every $31 purchase you can get something from the new Spirit Collection for 50% off. This is a collection geared toward schools and sports. You can personalize any item with embroidery and a few icons for only $5. You can download the specials here. Like I said before, I really like the Large Utility Tote. The Picnic Thermal is great too, I can pack lunch in square plastic lunch trays for all of us in this thermal tote. Pretty much, I like all of the bags :).

  1. Go to Shanole's 31 site:
  2. Click on "My Parties"
  3. Select "Esther's Fundraiser Part 2"
  4. You can order until next Tuesday, August 14th.

Esther loves this pink organizing utility tote and we've used it to bring toys and overnight gear to the hospital. She has put all of her hats into her brown mini retro metro bag.

Wednesday, August 8, 2012

Check that box



Esther's PICC line placement and stem cell collection went very well. They drew her blood out of the PICC line, it went through the machine and extracted stem cells and plasma (plasma is the yellow bag and stem cells the red bag), and then put the rest back into her body through her port. It took 58 minutes to completely remove and replace Esther's total blood volume. The daily goal is 6 cycles because that removes the maximum number of cells in a day.

The first round didn't work because they have to prime the machine with donor blood and it tried to extract the stem cells from that blood instead of Esther's. The send the cells at the halfway point for a preliminary count. They decided after the next two harvests to check the number of cells. After two harvests, they had collected 44 million cells. The goal was about 15 million. By the time the counts came back, we'd already harvested a third set of cells. The final count was about 113 million cells.

Esther's stem cells are now cryopreserved and waiting to rescue her after her MIBG therapy and her high dose chemo.

The machine was pretty amazing and looked like something out of Lost. It's kind of funny to me that super high tech, science machines have clunky knobs. I imagine them to be more sleek. I guess scientists would rather have function over form. Either way, it is a really crazy process.

You can't see it well in the picture, but the lines on the face of the machine had arrows on them to show if the blood was coming or going and the tubing was threaded along those lines. One of each pair of black knobs was always spinning.
This is the empty machine. Under the black ledge is the large centrofuge which was constantly spinning to separate the stem cells and plasma, every hour it would pump the cells and plasma up into the hanging bags.
Our nurse was great. She was decked out in shamrocks and a shirt that said, "Irish." My Grandma O'Neill loved everything shamrock and green and would've been so thrilled to see such a proud Irish lass helping Esther. I miss my grandma a lot, and it was a just a treat to see someone decked out in shamrocks in August.
I was caught by surprise today by the news that we will have to be admitted for her next round of chemo. When we met with the doctors to discuss her treatment plan, they told us all of her chemo infusions would be outpatient after the first round. Today our clinic nurse explained that the combination of chemo drugs she'll be getting has a lot of side effects they want to monitor and one of the drugs causes severe vomiting, and they want to be able to administer anti-nausea meds through her IV and keep her hydrated.

This was a blindside and I just started crying when the nurse told me. It's a four day infusion, so I asked if we could start on Tuesday rather than Monday and that is going to work. Hopefully we'll have a full 5 days at home. We don't have any scheduled appointments. I'm praying for refreshment for these next days.


Monday, August 6, 2012

Collecting Stem Cells

Yesterday Esther's ANC was 150, this morning it was 2300. The nurse practitioner called today and said, "Wow, well she's really rolling. Let's catch up." When I spoke to her on Sunday she thought the earliest we'd begin collection would be a week from today. The quiet, restful week I was hoping for is shaping up to not be restful in the sense of a quiet, low key week. That's not where rest comes from anyway, right?

Tomorrow we're headed to Children's to meet with the stem cell collection team. This team is also called BMT for Bone Marrow Transplant. Esther won't have a bone marrow transplant, but the process is similar, so we're in their care for this week. I'll probably call them BMT from now on because that's just easier.

The plan for the week thus far is Tuesday we'll meet with the BMT team for a general assessment, a detailed look at her counts, and she needs a platelet transfusion. There is a timing issue in all of this. This is because stem cells are the most basic cells in the body and will eventually develop into red, white & platelet cells. They need to catch them when there are as many as possible but before they turn into other cells. Tonight we increased her growth factor med to encourage her body to begin to release those cells into her blood stream. They will collect the cells the same way platelets are collected. She will be hooked up to a blood donation machine where they will slowly remove the blood from her body, collect the stem cells, and then put the rest of the blood back into her body. Her stem cells will be know like how super heros freeze things.

Wednesday Esther will have a PIC line placed, and they will screen her blood to see how many stem cells have been released into her bloodstream. If there are enough, we will start collecting on Wednesday afternoon. Thursday & Friday will be collection days as needed. This process can take up to 4 days, but usually a couple is all that is needed.

Esther will be given her stem cells back twice during her treatment. First she will recieve them following her MIBG therapy and then after her high dose chemo.

Be praying for our little one year old friend, Aly. She just had her high dose chemo last week and recieved her stem cells. This is a very dangerous time and I'm sure very stressful for her parents, Jodi & Fuzzy. Thomas is also doing well. He only has two treatments left. I was talking to my sister today and we both were encouraged by Thomas' light at the end of the tunnel.

Time has both been painfully slow and breathtakingly fast. The summer is nearly over, I can't even remember July. The end seems unreachable, but Thomas is nearly there. Aly is close. Esther will be there too.

Sunday, August 5, 2012

Home again

We were discharged this afternoon.  This week we'll be monitoring Esther's counts closely to watch for the signs that her stem cell production is peaking and then we'll start the stem cell draw.  Her ANC is still only 150, so we'll be sticking close to home.  I'm hoping for lots of rest this week and some unifying time for our family and marriage.

Saturday, August 4, 2012

Drink, Drink, Drink

That pretty much sums up Esther's last couple of days. She's been fever free since Thursday night and her blood cultures have not grown anything. This means now we're just waiting for her counts to rise. Yesterday her ANC was 4.8, today they were 24. The doctor said that Esther could possibly go home tomorrow because there are lots of baby white blood cells. This is probably the case because the growth factor she's taking right now to produce stem cells also produces a lot of white blood cells.

So, we've just been drinking and trying to stay regular. Rourke is off building lean-tos and getting super dirty in the mountains with his cousin, so Anthony and the girls came down this morning. They watched a movie and then I took the girls to Chili's. It always kills me a bit when we go to Chili's because they always want macaroni and's Kraft. At Chili's a serving of mac & cheese cost $5. That's at least 400% profit because I'm pretty sure mac & cheese is less than a buck at the grocery store. Oh well, it was fun and I even let them drink sprite.

They are at Manga & Papa's house for the night and Anthony and I are here at the hospital. We went for a walk after dinner and it was so pleasant. The sunset was beautiful tonight, a treat to watch out the windows at the end of the hall. Esther taught daddy the drinking game with the pavers in the grassy greenspace in front of the hospital. She was darling jumping from stone to stone.



Thursday, August 2, 2012

Out of ICU

Thank you for praying for Esther. I am reminded again by a verse a friend shared with me that God will save by many or few. He used many to help Esther yesterday.

Esther was moved from the ICU about 4pm today, and now we're on the 8th floor. The oncology floor is actually the 7th floor, but often it's full and they overflow to the 8th floor. I like the 8th floor better. It's not so serious and there is less commotion, you can see out the windows, but on the 7th floor they are frosted about 18" up and you can't really see out. I'm glad we're on the 8th floor.

Anyway, I'm tired and rambling. Today was an overall boring day, waiting to either stay or go. Esther slept a lot today and watched a lot of TV. They kept telling us "we'll go up shortly." In "hospital time" that means anywhere from now to 8 hours. In our case, it was 8 hours.

The ICU wasn't so bad, our nurse was busy with two patients and didn't really bother us too much last night. Her blood pressure, heart rate, and temperature were monitored closely and have recovered fairly well. Her temperature has been fluctuating between normal and 102.5. She is responding well to tylenol, so that helps. She had a blood transfusion today and perked up a bit. Her hemoglobin was fine yesterday but fevers kill red blood cells because your heart is working so hard to keep up the body temperature, so she needed blood today.

Hopefully her counts will rise quickly this time around and we'll be able to go home sooner, but I feel prepared for a longer stay. Her blood cultures have come back clean so far, but it takes 48 hours for most of the cultures they run and a full 72 hours for complete cultures. Because she is still fevering 24 hours after the first fever, they did another set of blood cultures. We'll keep you posted. Thank you for praying. I'm looking forward to bed!


Wednesday, August 1, 2012

Fevers are serious...

We've had a two weeks home and I am so thankful for that time. This morning Esther spiked a fever, so down to Denver we went. We arrived at the oncology clinic to start some precautionary antibiotics. One huge praise and proud mommy moment was when we accessed her port. Thanks to "Magic Cream" Esther's port site is numbed, but she's still been really scared and vocal. Today she showed self control and didn't scream. She cried a little, but when the nurse actually poked the needle into her port, she was calm and trusting.

We got to our room, she had her antibiotics, we got the news that she's neutropenic (we knew this would be the case) and that she'd need to be admitted. We watched some athletic competition going on...can't remember the name, painted and colored pictures. Esther was really cheerful and happy. Her fever had gone down a little, but was still over 100.

The oncology doctor in the clinic came by to take a look at Esther, commented on her beautiful pictures and then it started. Esther began to shiver a little. Within a couple minutes she was full on shaking. The doctor immediately ordered vital signs and Esther had spiked a 105.8 fever. That's not a typo...

Her heart rate was averaging about 175, going up to almost 190 beats/minute. It should be around 100-110. Her blood pressure was also not looking great. The doctor ordered IV fluids and regular vital sign checks. They gave her another dose of tylenol about 1.5 hrs early than needed to try to get the fever down. It dropped to about 104.6 but not low enough so they gave her motrin as well. Oncology patients can't always take anything with ibuprofen because it messes with their platelets. Thankfully, Esther's platelets were plenty high to handle it.

The doctor consulted a couple other doctors and decided it was best to admit her to the ICU because her blood pressure was not recovering as well as they would like to see and with such a high fever it would be best to monitor her closely overnight. I agreed.

There are very nice doctors down here and they all commented on how special Esther's name is. Yes, indeed. The oncology doctor suspects this fever is nothing that she has "caught" but that sometimes chemotherapy patients' own bacteria can either get out of control or escape into a different part of their bodies causing an infection.

I am humbled by the gravity of this whole journey. Her disease is serious and the treatment is dangerous. I have been somewhat flippant, people get chemo everyday and are just fine. I was overall peaceful this afternoon and thankful to be at the hospital. Even though our time at home was only about 2 weeks, it was a break. A huge break considering we hadn't really been home for almost an entire month before. I feel refreshed by the time at home and peaceful that we are here.

Please pray for grace for today. That we would look toward today and not tomorrow. Pray for Esther to overcome this infection and be herself. I think one of the hardest things about this hand of cancer is how much my little girl isn't herself. I see glimpses when she runs to get her water or her toy or to the bathroom. Esther has always just ran to her next location. When she makes faces as she's talking and has sweet inflections in her voice. But she's not the same, she's fearful and doesn't trust like she used to. I miss that little girl who didn't really have a care, she was secure.

I am reminded, though, of the sweet girl God has made her. Our normal nurse was out for the day, so the other nurses fought over who would get to care for Esther. When we made it down to the ICU she was already charming the nurses, saying thank you and telling them her name and birthdate. At one point she was laying on the bed and the nurse was getting ready to take her vital signs. She laid there and held her arm right up for the blood pressure cuff and then told the nurse "I sorry, I won't take my sticker off again." She has a sticker on her toe to monitor her oxygen, she'd been kicking it off all afternoon. Then she said,"You need my tubey? I get it, it's right here," and she pulled the tube connected to her port from under her dress so the nurse could hook it up to an IV. All so very sweet. I want to see those moments and not get stuck on the struggles.