A God Who Hears, Who Wipes Away My Tears

This morning was peaceful. We woke up expecting a really busy day, but it was mostly a day of waiting. Our tests were not scheduled as early as we'd hoped. It was a sweet time, though. Our day stared off from a visit from a Child Life Specialist who brought Esther a bunch of goodies...she got play dough, a princess tea party set, books, markers, crayons and fun things to color, a puzzle and a memory game.

We got to see our friend, Thomas, and his family. We prayed and chatted for just a little bit. They were ready to head home. When I told her Thomas was coming she said "Yea, I like him." She was shy when they arrived, but after they left she said told me it was fun to see Thomas.


She had a short MRI that was scheduled for 3:45pm and a CT scan for 6pm, so Anthony headed out about 12 or so to get the kids and my nephew to come for a visit. It was good to see the kids...they had lots of questions and thought Esther's bed was pretty cool. Anthony stayed with Esther and I took the kids back down through the hospital with my mom. We checked out the amazing murals on the floor of the main level from the 4th floor, took a trip to the second floor to check out the lego version of Children's Hospital, and then made our way down to the first floor in the glass elevators. This facility is so beautiful and I'm really thankful to be at a hospital just for kids.


When I returned to the floor I saw our oncologist standing outside the door talking with another doctor. It was one of those tunnel vision things from the Wonder Years. I met them at the door and they came in, along with another doctor, to talk with us a little more about Esther's tumor and her bone marrow biopsy.


They have confirmed that it is a neuroblastoma and did find it in her marrow. The bump on her head is not her primary tumor. Neuroblastoma doesn't start in the bones, it starts elsewhere, usually in the abdomen, and often metastasizes in the bones. She has stage IV neuroblastoma. We will have a treatment meeting tomorrow afternoon sometime, but they said that treatment will need to include chemo, surgery, radiation, and bone marrow transplant.


After the doctors left and Esther was peacefully sleeping, we began to read more about what stage IV means and wondering what will the outcome of this whole journey be. Even now as I write, it seems utterly unreal, phenominally painful. As I watched this little girl sleep a peaceful sleep, I wondered how long has this cancer been in her body. She never had any symptoms...most neurblastoma's don't have a symptom until it's already spread. What an ugly disease.


This is so hard and we aren't even to the hard stuff yet. I'm scared. We met with a social worker who was comforting.


Esther's MRI was delayed, but that was a kindness because she was able to rest and they ended up being able to do the MRI and CT back to back. She just had to down an 8oz contrast in 30 min. We made a game out of it and she did well. The MRI was terrifying for her, but since they didn't need images too precise, they rolled her up in a blanket so she couldn't move and just gutted through it. We went straight to the CT scan and had some IV problems that caused her some pain. She wasn't as scared but her cries were enough to about kill you.


This afternoon felt like one blow after another. And one thing about hospitals is why do they have such crappy kleenex? It's like using a tiny piece of sandpaper to wipe away your tears.


We returned to her room, Anthony left to get some food and I was feeling hopeless. I pulled out a stack of cards from Frannie & Lydia's Sunday school classmates and in it was a book with pictures from a lot of the classes wishing Esther health. It has a short phrase under the picture of one of the classes and it says, "Dear Esther" "all of your friends" "are praying for you" "to a God who hears" "You are our sweet friend" "and we can't wait to see you soon" "We love you, from your friends at church."


A glimmer of hope...we have a God who does hear. He hears. And He promises to wipe away every tear...and it will be tender, gentle, with kisses and a loving embrace, not abrasive like the kleenex in this room.


We hung the cards in her room and as I read them to her one by one they said "Esther" and I remembered, her name means victorious. Another kindness in an afternoon filled with sorrow.


The song below is so good. A simply hymn put to a different tone...an honest cry. You can read the author's testimony as to her arrangement of this song. I love watching this video, the honest struggle. The pain in her playing, this dissonance in the chords. This world is harsh but there IS hope. It may be muted, but God is good. It doesn't match up all the time. About 3 minutes in she cries out,

"And I can't understand. And I can't pretend this will be alright in the end. So I'll try my best and lift up my chest to sing about this joy."

 

In the album version she ends with the lyrics to "It is well with my soul"

When peace like a river

Attendeth my way

When sorrows like sea billows roll.

Whatever my lost

Thou has taught me to say

It is well

It is well

With my soul

Rerouted

A month ago we were enjoying a nice 3 day weekend. I emceed at church, we helped in Sunday school, I grilled some steaks, and we got ready for my mom to come into town.

Three weeks ago the girls had just enjoyed a fabulous tea party for Lydia & Frannie's 6th birthday.

Two weeks ago, Sam and the kids were in the thick of VBS week, we were thoroughly enjoying our new windows, and just had a little MRI that coming Friday that we were barely concerned about. It's probably just a lipoma or maybe a hemangioma at worst.

One week ago, we were preparing for our Esther to have a likely benign tumor and part of her skull removed in major surgery. She would have some metal in her head but it would be done and they'd do a biopsy just to be sure the tumor wasn't bad.

Today, we're spending our first night in Children's hospital as they determine how far the neuroblastoma cancer has spread throughout her body and how to treat this deadly disease. Esther had no symptoms but now she can't keep any food or water down because of her third round of anesthesia in a week and a half.

Esther was patient and brave today and did very well, has "good veins" and they were able to easily place her port and take bone marrow samples from her hips. We still do not have a final, conclusive verification that the cancer is neuroblastoma but they are very sure that's what it is. Tomorrow will bring a CT scan, a PET scan, an MRI, and blood work. The concern is that neuroblastoma usually starts around the adrenal glands, in the abdomen, and that the tumor in Esther's skull is not where it began. Pray the tumor would be abnormally isolated. We should have initial pathology results from her bone marrow biopsy tomorrow.

In less than a week our lives have been completely flipped upside down. Completely rerouted. Likely to never be the same ever again. It's still hard to believe this is all real sitting here in this hospital room with Esther and Sam. I'm frustrated and angry. Esther is getting irritable and this is only the beginning. She has been so brave and patient but she can only handle so much. Why sweet little Esther? Why not one of us? Why her? I have no idea. I have no clue how to handle this.

But the truth is that God is the same yesterday, today and tomorrow. He is good and his love through Christ has not changed. I don't know what He's doing but I know he is in control and will work all things for the good of those who love him. Am I struggling to believe that right now? Definitely.

But I also know that God willingly gave his own child who suffered that we might be free from sin, that we would know him and trust him. God willingly did this. Jesus willingly went to the cross for us. The greatest threat to us was never sickness or cancer or forest fires or even death. The biggest threat has always been our separation from Jesus and our inability to get back to him. God sent his own son to suffer and die to change that. He made a statement once and for all that he loves us and wants us to be with him.

We don't know why God is doing this (and doubt it not, he is over all this), but we know that he is with us. He is no stranger to suffering and tears. He understands. He grieves with us. He has not deserted us or forgot about us.

If the LORD had not been my help,

my soul would soon have lived in the land of silence.

When I thought, "My foot slips,"

your steadfast love, O LORD, held me up.

When the cares of my heart are many,

your consolations cheer my soul.

Psalm 95:17-19

Fingerprints Of Kindness, Unending Faithfulness

The days are running together and the waiting today is agony.  At first this morning I kind of forgot that we'd be getting news from Dr. Garrington, I've been so focused on Tuesday...that Tuesday we will enter the doors of Children's Hospital and it all gets very, very real.

Update (5pm)
Some good news: The test results so far indicate that the cancer is the Neuroblastoma type and NOT the sarcoma. They still have more tests to run. It's likely Esther will have 5 straight days of inpatient chemo starting Thursday or Friday. The doctor's concern is that because the cancer is in a weird location (in her skull) that it might have started somewhere else. Please pray that this is not the case. But praise God that all indicators are that it is not the sarcoma! We'll be at Children's Hospital starting tomorrow when she has her chemo port put in (surgery starting at 1pm) and more tests done and we'll come home after her first round of treatment is done. (update from Anthony)

The last week has been such a blur, so dull and so vivid.  I keep finding myself in a room and no idea why I'm there or stopping mid-sentence.  I am overwhelmed by fear in circumstances, sadness for a little girl who has really no idea the journey she will endure, heartbroken for my other four children who are doing their best to understand all of the new needs and who are scared for their little sister.

At the same time I am overwhelmed by the kindness and love shown to us.  Thank you for praying and asking others to join in prayer.  We are desperate for it and feel lifted up.  For the amazing friends who spent a hot Saturday afternoon scrubbing my un-airconditioned house, washing every sheet, towel, blanket, stuffed animal and piece of clothing they could find.  I am thankful for the generous friends and family who see our needs when we're just walking in circles.  We feel so unworthy of such love. 

I am striving to continually remind myself, from simple VBS lessons, I can trust God...no matter who you are, no matter how you feel, no matter what people do, no matter what happens,no matter where you are.

The morning of Esther's biopsy I was fighting to remember that God is a kind and generous God who willingly gave His son's life for my own, that He doesn't punish.  This trial isn't because of something we have or have not done.  The One Year Bible reading for that day was 2 Kings 3-4:17, there were three stories of God's kindness.  He united three kings & gave them victory against enemies even though they hadn't honored God's ways.  He generously provided for a woman about to lose her children to a creditor by multiplying the only thing of value she had...a small jar of oil.  She trusted God and He multiplied that oil.  He saved her sons.  Right after that is the story of a Shunammite woman who had shown the prophet Elisha hospitality when he was in town.  She was not a Jew and did not culturally follow the ways of the Israelites.  She could bring God nothing, she did not know the religious rules and standards, yet God had a kindness planned for her. She had no son and her husband was old.  Elisha inquired about what be a way for them to thank her.  She was too afraid to ask, it was just too painful so another had to tell Elisha her want for a son.  When Elisha told her she would have a son she said, "No, my lord, O man of God; do not lie to your servant." The next year she held her son.

I was right there...scared to hope.  From my journal..

"You poured goodness over undeserving kings and faithful people.  Yu are the same---you are my jar filler, my child giver--hope where none is found, the Shunammite woman couldn't fathom to believe--it just hurt too much, but you did it!"

God is good and kind no matter what.  I can trust God not because I am good and faithful but because HE is good and faithful.  I continually see his fingerprints of kindness.  There are two other families we know with children fighting cancer...God has given us friends to pray with, talk with, eat with.  While we'd rather be spending time together under different circumstances, this too is a kindness.  These families would love your prayers too and we'd love for you to lift up their lives along with Esther's.  You can read about Thomas' journey here: http://shapingheartshome.wordpress.com/ and Aly's journey here: http://www.caringbridge.org/visit/AlyzaConley.

Thank you for your prayers and support.  Pray we would continue to see God's fingerprints, that we would remember His unending faithfulness.

Victorious Is Her Name

We named Esther after Queen Esther in the Bible.  We have prayed for her that she would be brave and victorious throughout her life.  Queen Esther was beautiful, smart, calm, and stood up for what was right.  She risked her life for the good of a nation about to be unjustly destroyed.  She was brave.  She was victorious.

Thanks to Illumination Photography for a last minute photo shoot.

Today our 3 1/2 year old daughter, Esther, was diagnosed with cancer.  Over the last week she has been so brave, so calm.  She has trusted us and it has been beautiful to see. 

About a month ago we noticed a bump on Esther's head.  She hadn't hit her head that day and we thought it could've been a bug bite.  We waited a couple days and went to the doctor.  Because the bump was soft and could move a little, he wanted to watch it to see if it would shrink thinking it could be a cyst or a benign, fatty tumor.  I called back after a week and a half because it wasn't getting smaller and the doctor ordered an MRI.  The results of the MRI revealed that there was a mass going through her skull bone and that she needed to be seen by the doctors at Children's Hospital in Denver.  At this point we were still thinking it was something benign. 

We met with a couple of neurosurgeons who took a full skeletal x-ray and evaluated Esther's MRI.  They had a plan to do surgery to remove the tumor and portion of her skull.  However, after passing the images onto other doctors and oncology, the surgeons thought it was too risky to cut into the bone because if the tumor was malignant, it could risk spreading cancer cells. Instead, they scheduled a biopsy for today, Friday, June 22.

Esther was such a brave, calm, beautiful little girl.  Her biopsy was scheduled for 1:30am...that meant no food after 5:30am and no drink after 11:30am.  We woke her up at 5 and she choked down some yogurt and a few cheerios.  We actually didn't make it into the OR until about 2:30pm.  She was so calm and patient and never fussed about being hungry.  She was only anxious just before the biopsy when the anesthesiologist came to talk us through the process.  Esther asked for us to "leave now."  That was hard...to just hold this little girl and ask her to trust us, to tell her we love her and that Jesus loves her, and that it's going to be okay no matter what.  Especially when we know the road ahead could be extremely painful for her.  She did trust us.  We walked back to the OR, I held her tight.  When we got there, she laid on the bed and held our hands.  Such a gift of a sweet girl.

We went down to the cafeteria to eat some lunch and waited for a call from the nurse who was going to check in about half way through the procedure.  She never called, so we went back up to the surgery center.  Shortly after that the surgeon, Dr. Wilkinson, and our oncologist, Dr. Garrington, came out to tell us that the procedure was successful and they were able to get a conclusive result from the biopsy.  They found a blue-celled, malignant cancer.

We listened as best as we could, losing the fight with tears.  We had talked with Dr. Wilkinson the day before and he told us that they were suspecting this type of cancer, so we knew a little of what to expect.  The tumor is either a neuoblastoma or a Ewing's sarcoma.  We are desperate for prayer that it is a neuroblastoma because a Ewing's tumor is very dangerous.  I know it's a strange request to pray for cancer, but we covet your prayers.

We should know on Monday what type of cancer it is.  Tuesday we will go back to Children's Hospital and she will have a chemo port put in, a bone marrow biospy, and lots of other tests.  Dr. Garrington said that we should expect to stay at Children's through the weekend so they can run all the needed tests to determine if it has metastasized anywhere and what is the best treatment plan.  We can expect to begin chemo next week as both of these types of cancers have to be aggressively treated.  Dr. Wilkinson told us that when contained, neuroblastomas generally melt away with chemo. 

Please pray that the tumor is contained and has not metastasized anywhere in her body.  Initial blood tests and skeletal x-rays did not show anything alarming as far as we know.  Pray that this tumor would melt away and not come back.  Pray for her to handle it all with bravery, grace, patience, and trust.  Pray for wisdom as we figure out how to do this as a family and for Rourke, Lydia, Frannie & Zinnia to trust us, yield their hearts and to trust God.  Pray for us to be united and on the same team, to be selfless and patient with each other and our children.  Pray for Esther to be healed...Victorious Is Her Name.

Bedtime

Hearts are won each night with story,

Children sprawled across the stage,

Mystery, wonder, fear and glory

Found at tender age.

A father's time, his words, his touch

with fiction, prose, and song

Hearts won each night with such

Lessons learned as Truth and right and wrong.

A battle for my heart is fought

Each night with lessons taught

And reprieve found in a Fathers grace

For my children's lives and mine.

Hearts are won each night with story

Tender love displayed.

Thank you Lord for Your gift,

A father who gives You glory.  

Rourke and the Lion's Den

Rourke really likes tools.  He loves to build...legos, puzzles, anything.  He's been asking to build something for months now and today he started trying to build a house for the lion he received as a baby; it's one of his favorite companions. 

Our first step was to talk about how lions live in dens, not houses, so we could build him a den.  Rourke and his sisters gathered small scraps from our firewood pile, I found some finishing nails in the garage, we put the little girls down for their naps, and Rourke got his tools.  We were ready to work!

Using my limited building skills, we worked something out.  Rourke is a great hammerer.  We talked about how Jesus was a carpenter and he probably hammered his fingers a few times too.  I was proud of him for not giving up or complaining.  We started by building the walls and then as we tried to put the walls together, the pieces kept falling off.  There's a reason you build the frame of a room first.   Rourke encouraged us to keep going, so we did.   He displayed a lot more patience than I did!

 

Rourke and his den.

 

 Lion was very pleased with his new living quarters.

I gained several splinters and this beauty. 

"Mommy, Good thing you're a doctor."

Last night we had an EPIC wrestling match.

Ding, Ding!  Meet contender #1:

Rourke's beloved Glo Bear was a gift from my mom, Manga, about the time Zinnia & Esther were born.  He loves this bear...big time.  Glo Bear looks all soft & cuddly, but he's packed full of muscles, a protector of other stuffed animals in the Alvarado home. 

Next in the ring, contender #2 and Glo Bear's team mate:

Ding, ding!  El Siete: He is seven and a fierce competitor.   Don't be fooled by the tooth that hasn't come in yet, he's already manned his way through the 4 that pierced right through his gums.

Finally, a worthy opponent.  A competitor unmatched in strength and valor.  My husband....

*The crowd gasps*  Rourke and Glo Bear were not afraid of such a competitor knowing that he's actually quite nice and this crazy picture was taken while we were on our 10th anniversary trip to Glenwood Springs just after midnight as we got out of the pool and it was about 4 degrees, but as you can see, even frigid air does not intimate this luchador.

THE MATCH

The Siete/Glo Bear team were in and out of the ring holding their own against el Loco.  Glo Bear got into a bit of trouble and was reaching for a tag from his partner when suddenly a cry like I've never heard took over the ring.  Tragedy had struck...

In the heat of battle, Glo Bear lost his head.  Terror, grief, tears, the crowd was silent...except the broken heart of a 7 year old and the muffled giggles coming from a mom and dad who find the whole situation a bit humorous.

"Mom, can you fix him?" gasped a sad seven year old.

"Of course!  Let's go!" I reassured my boy and we hugged and then raced to the operating room.  My faithful nurse assisted with surgery, saying "Mom, good thing you're a doctor."  Yes, good thing indeed.

 

 It was a tense situation but Glo Bear made it out whole and was reunited with his teammate.  

Glo Bear's recovery time was immediate.  Within 5 minutes he had assembled all the stuffed animals on his behalf and El Siete organized with the lovely ladies of the Fab Four.  Loco Luchador didn't stand a chance.