Surgery

Lakeside is one of my favorite places to go. I think I love it so much because my grandma always shared so many wonderful stories of her courtship with my grandpa. My mom and dad reminice about the fun house that burned down and the big lady with the scary laugh. Lakeside has had it's share of tragedies as well...the wooden roller coaster is both thrilling and terrifying. I've held my breath around the curve that extends over the lake as I remember the time my grandma told me of the coaster full of people that plunged into the lake.

 

Everytime I ride that coaster I wonder if it's safe. As I survey the chipping paint on the wood scaffolds, holding up the rails and yells only a roller coaster can produce, it seems a fragile maze. However, lawsuits are strong, and I comfort myself with the logic that Lakeside doesn't want a big lawsuit and must uphold certain safety measures, so I must be safe. Still, the risk makes my heart surge.

 

Surgery is tomorrow (or today if you're reading this on Monday). We will check in at 9am and Esther's surgery should begin at 11am. The doctor has scheduled 5 hours for the surgery, so it will be a long day. We can expect to be in the hospital for 5-7 days.

 

One fun thing about a roller coaster is screaming along with the person in the seat next to you. As the coaster turns sometimes you're leaning in and other times you're supporting your companion. God has given us people to share the coaster car. Thomas is having his port taken out, and Aly has an appointment with a doctor today too. I can only imagine the purpose God has in having these two families so nearby as Esther undergoes such an intense surgery, but I am thankful for the riding companions.

 

It seems like this day was so far off, yet here it is. I'm not sure if I want to ride this coaster, but my lapbelt is fastened and the metal bar is locked in place. We are going through that first, dark tunnel and have just started up the first big hill.

 

This coaster is not stopping. We are about to crest that hill and take off, and I wonder...will the tresses hold? Surgery is a big deal, there is great risk. At the same time, it's routine. There are many safety precautions and lots of practice. Just like everytime I see the water nearing as we round that sharp curve on the coaster, I wonder if we're going to make it safely.

 

Please pray

• For Peace
• For us to draw near to The Lord and to rest in His presence
• For the tumor and residual cells to be clearly seen
• For Dr. Bruney's hands to be accurate and steady and for her eyes to be keen to seeing all of the tumor she can find
• For Esther's body to heal well
• For her gut to wake up quickly after surgery
• That Esther would be healed
• For God to be revealed in our lives and in Esther's life
• For grace to know and love God more

The thing about that old wooden roller coaster is that it's a lot more fun if you put your hands up. Isn't that how it is as we journey with God? The moments we release the grip on that cold bar and reach up for the thrill of ride, are the defining ones. Pray we would walk tomorrow with arms lifted high. That we would surrender the fear of the ride and place our security in the One who brings us joy.

 

 

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Good Scans

 Esther's scans went well the last two days and everything is shrinking. Her primary tumor is less than half of it's size. Her original tumor was 5cm x 7cm, today it was 2.9cm x 2.3cm.

The MIBG scan also reflected less neuroblastoma cells in her other locations. We knew that since her head is so nice & round these days! Other big news is that we received tentative dates for her MIBG therapy and this next month is going to be crazy.


Surgery is October 1st. She will then start her 5th round of chemo about October 15th. We are scheduled to meet with the doctor in Cincinnati November 1st. November 2nd will be our radiation safety training. Esther will be admitted to the hospital Monday, November 5th and she'll have the MIBG injection Tuesday, November 6th. She'll be radioactive 3-5ish days and we'll go home when it's safe for her to return. She will receive some of her stem cells on November 18th to help her body recover. We will then start her high dose chemo treatment sometime between December 10th and January 1st.

Whew, this is going fast.

Another sort of fun thing, the hospital called yesterday and asked if Esther would be the cover model for a fundraiser for the Center for Cancer and Blood Disorders. The center does a big fundraiser each year by selling Christmas cards using art by the patients. Esther submitted scribbles only a mother could love, but where her art skills lacked, cuteness prevailed. Those big green eyes and beautiful smile will be seeking lots of Christmas card sales over the next couple months.

Thank you for praying. We are pleased with the results. To God be the glory!

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From Whom All Blessings Flow

Esther did well today! She drank her contrast with no problems and even said "yum" a couple times. She held still for the CT scan. I took a video for the kids...don't mind the commentary :). In the morning she has her MIBG scan and we'll talk over the scans with one of our doctors later in the day.

The last few months have been some of the most humbling moments in my life. Never before has this self-reliant, capable woman been so accustomed to receiving help. It's not easy for me. For some reason I can't really define, I've always felt as if I've been on my own. I take on way too much and am afraid to burden anyone with my needs.

I could never express the gratitude I feel for the ways our needs have been met over the last few months. Words are utterly insufficient. We have experienced generosity of prayer, time, effort, and finances. We have been held up in ways I could never have imagined. And for a woman who has lived life afraid of causing burden, this has been striking to me. I feel so undeserved of such love and am moved to tears as I consider the support we've been shown.

Tonight I made a connection. This generosity, love, and support, all undeserved, is a reflection of our Creator. The Bible says we are created in the image of God. He has left an imprint on each of our beings. Whether we are walking life near to Him or have lived life peeking around bricks of fear, hurt, hypocrisy, confusion, or pain, we are marked the same, in His image.

God, Father, is generous, kind, sees our needs, loves us, hurts with us, weeps with us, hopes with us, listens to us. He is eager to hear how we are doing. All of the goodness we've seen through such sorrow is ALL, it is ALL, a reflection of the God who made us. That is God...I hope you get this. God is loving. God is kind. God is good. He is eager to enter into our hurts and promises to be our help in time of need (Hebrews4:16).

Praise God, from Whom all blessings flow;
Praise Him, all creatures here below;
Praise Him above, ye heavenly host;
Praise Father, Son, and Holy Ghost.

Hallelujah! Hallelujah!

Oh, Praise Him! Oh, Praise Him!

The blessings have been rushing waters and we are bathing in the goodness of God. We are so unworthy, but love is shown just the same. It is through tears I recount some of the blessings we've been shown. God hears every prayer lifted up on our behalf. We can make choices to treat Esther's cancer medically, but God is the healer and He will decide Esther's fate. You are petitioning the one who is in control. Thank you.

Every time I turn a page in one of the books our friends from our home school program, Classical Conversations, I am reminded that we are not alone.

With each dollar donated at the fundraiser our friends from the twins club organized, I see God's faithfulness to multiply a tiny amount of faith into an enormous, shady tree. (Mark 4:30-32) I think of how Jesus fed thousands with just five loaves and two fish. (John 6). Each donated prize is a loaf or fish for God to use. Thank you.

Next week the carpet on the first floor of our house will be pulled up and replaced with hardwood. Our friend negotiated an amazing deal on the flooring and a stranger, a man we just met, has offered to install the floor for free. The flooring was paid for, and we don't know who is responsible. Over the next few months Esther's immune system will be extremely weak. The tiniest bit of fungus, mildew, or mold can make her extremely sick. The tiniest virus can easily turn ugly with a little dust. Hardwood will allow us to keep these things at bay. This is a gift beyond anything we could ever have imagined. This reminds me of God's grace, generosity we could never imagine.

You see, flooring is a good gift and will help. But the grace is that it's not just about having a clean house. This can help us be together, to be a family. I can be with my husband and all five of my children in my home. We can sleep in our own beds and heal together. These are nights spent not in a hospital miles away. This is grace. God is gracious...He doesn't just give us a clean house, but the gifts that mean the most, especially when the number of our days must be treasured when cancer is your enemy.

Oh, Praise Him! Oh, Praise Him!

With this project we will need some help. Monday, October 1st, from about 4-8pm a crew will meet at our home to move furniture out of the way and to take out the carpet. The installer will work throughout the week and should be finished by the evening of Saturday, October 6th when we will need help again moving things back into the house and cleaning any dust that is stirred up from the process. Our friend coordinating all of this would be very blessed by an idea of who might be coming to help, so if this is something you could spend a few hours helping with, would you please email me or Anthony so we can pass on the message?

**UPDATE**  

We created an email account for this blog: VictoriousIsHerName@gmail.com.

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Scans This Week, Lots of Prayer Requests

First, will you please take a minute right now to ask God for health for our family. Someone has been sick since mid-August. We usually have a round or two of colds during the winter months, but it is never this drawn out. Esther has had three colds over the last 6 weeks. I feel like she hasn't had time to recover. My sister's family has also been fighting colds consistently. We've tried to be so careful and make sure to keep things clean, but something continues to creep in. Please pray our family would be healthy and we would not have any more colds!

It's funny how in my previous life, pre-cancer, driving to Denver two days in a row would not be exciting, I'd likely be annoyed. But this week we will be driving to Denver for just two days. Funny how it all changes and a couple days aren't a big deal. Although, I guess the next two days are actually a big deal.


Esther has scans this week. Tomorrow she'll have a CT scan and will have an MIBG injection. This is a much smaller concentrate of the same radioactive isotope she'll receive when she has treatment in Cincinnati. This isotope is specific to neuroblastoma cells and allows them to be more clearly seen than is possible with a CT scan or MRI.

The cells then have a day to absorb the isotope and EARLY Thursday morning she will have the MIBG scan. She will have to be sedated because the scan can take a couple of hours and she must lie still. We'll meet with our doctor that day as well.

Please pray her scans are favorable and her tumors and other metastases have shrunk. We have no reason to believe chemo has not been doing it's job as the tumor on her head has nearly gone away. Pray for her to drink the contrast and to not be nauseas. Pray for her lie still during the CT scan and that she wouldn't be afraid of the "doughnut." Pray for protection of her body from effects of the MIBG injection. Pray there would be no new tumors or lesions in her body. Pray for a safe drive in the rain, even for a dry drive, and not too much waiting at the hospital.

The scans are in preparation for Esther's surgery, which is next Monday, October 1st. It will be an intense surgery. It's funny, though, the doctor was discussing risks with the surgery...the biggest risk was a blood transfusion. It is both humorous and sad that a blood transfusion has become commonplace and doesn't seem like a risk anymore. The kids are excited to be with all of their grandparents as Anthony's mom is coming next week. We will stay in Denver to make visiting Esther and seeing Grandma Sherry easier. Lydia has asked at least 5 times if they can go fishing. She even drilled my dad yesterday to make sure he knew exactly where their poles and fishing bags are located.

Please pray for peace over the next several days as we wait for surgery. I feel like we've just finished the warm up laps, and our feet are settling back into the starting blocks, hearts pounding as we wait for the gun to shout the race has begun.

Next week also has some big changes for our home...something that has left us a little breathless. I'm excited to tell you more about it tomorrow. Throughout this journey we have been so blessed by generosity. This last couple of weeks have been particularly vibrant, and just tonight I cried in the parking lot at Target, overwhelmed with gratitude.

For now, rest. The days ahead are long and full.

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As For Me

We went to church last Sunday and sung a new song, "As For Me" by One Sonic Society.

As we sung the song, my arms were filled with a little girl with no hair, wearing a mask to avoid getting sick. I began to weep as we sung this line...

"When the cost is great, You are greater still"

There I was, standing there, feeling the suffocating cost. Comforted that He is greater still. The next few lines in the song are...

I am standing on this one thing

You will come again and all the world will see

You lifted up

We made it home today, and my feet have felt quite insecure all afternoon. Getting home from the hospital is disorienting. I almost don't know what to do when I get home and am weighed down by feelings of guilt because I haven't been there. I feel like I need time to orient myself. Where is the heart of my husband and my children, what needs to they have, do we need to wash towels, the flowers are drooping and dying, should I water them? I can't just re-engage and take off running. My feet are not standing on the hope of Christ's return, they are sinking into guilt that is completely unwarranted. My guilt is gone, it was placed upon the cross of Christ. When I remember this truth, I am settled, and my feet can step forward, firm.

This has been my comfort over the last few difficult days. I really can only stand on one thing, my feet slip and fall on any other ground, Jesus will come again. The pain of this life will not endure. We will see Christ lifted up.

Too often my eyes see what is hard, ugly, trying, inconvenient. Those are easy things which to call attention, and it's just not attractive. Seriously, who has ever watched a political ad and thought, "Wow, I'm so glad I saw that. That made me feel great! I am moved to good, and I'm gonna vote for that guy!" No, it distracts us, turns us toward ugliness and half truths about the opponent...we have no idea what the guy who "approved this message" is going to do, but we sure know the other guy is total scum bag. Quite honestly, I don't really care if the mud is full of truth, the way it is slung around disgusts me, and I don't really want to vote for anyone who approves such messages. And we become angry, annoyed, mad. Never are we built up, encouraged. It causes us to become anxious, fretful. When the wrong things are lifted up, peace and comfort will not be found.

While my wonderings when I arrive home are not ugly political ads, comfort and peace are not found as I pull in the driveway. I think I need to chew on this a while longer, but my initial thought is that I am lifting up the wrong things. I am lifting up the needs of my home and family and my own insufficiencies (either caused by circumstance or my own weaknesses) before the hope set before me.

One day we won't do that anymore, we will see Him lifted up. It will be good...there will be no more tears, no more pain, no more death. The song continues...

I will sing, I will sing

God be praised, God be praised

All will see, All will see

God be praised, God be praised

That is our prayer for all of this...that God would be lifted up and we would sing His praises. Not that it's supposed to be easy or that we can't struggle...neither of those things does God ever promise. He says He collects our tears and is greater still.

I found this video distracting, but listen and minimize the video. Sing the song, it's good, refreshing.

 

Here's the lyrics:

I have heard the call and i will not be moved

I have set my heart on one thing

I will wear your name for all the world to see

You lifted up

As for me i will raise your banner high

I will shout aloud your name i wont deny

Jesus you have given all so i give you my life

I will raise your banner high

When the cost is great you are greater still

I am standing on this one thing

You will come again and all the world will see

You lifted up

I will sing I will sing

God be praised God be praised

All will see All will see

God be praised God be praised

 

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So Loved!

We are still in Denver tonight.   *Hopefully* we will be going home tomorrow morning.  This morning Esther's platelets were low again and she ended up needing another transfusion...that is 4 platelet transfusions in one week.  Yikes!  The doctor would like to know where her platelets are in the morning before discharging us.  I agree with this as we all want to avoid an emergency over the weekend.  So, if she's lowish again in the morning, she may have another transfusion.  Also, our primary doc changed her parameters to transfuse at a higher level than normal.  I appreciate the caution because we don't want such a scary bleed again.  Tonight she has been fever free so far.  Please pray she remains so!

Tonight in Fort Collins, well Loveland, really, there has been a ton of work going on.  Here's a picture of the drawing for Esther, isn't it amazing.  My friend, Kim, has been working so hard putting it all together and we are so blessed by all of the donated items.  Thank you!

So...if you want to check out the Grow With Me Kids Sale and see this amazing display for yourself, here's the skinny..

Free parking and admission

Friday, September 21, from 10am-8pm

Saturday, September 22,  from 9am-2pm

The Ranch in Loveland

I have to say, I am so sad to miss this sale.  I have made such dear friends through the process of helping grow the sale.  This has been a gift to me and I am thankful.  It's kind of neat, though, because in a way I am there.  I HOPE I can at least stop by to say hi.  

Fevers, fevers, fevers

Esther spiked another fever tonight...another blood culture, another day at the hospital.  Her ANC was up to 348 today, so that is good.  At this point even if she's over 500, we'll have to stay until she's had at least 24 hours fever free and clean blood cultures.

She has a cold and the inpatient doctor thinks her fever is because of that.  I certainly hope so.  There has been nothing in her blood cultures, so we wait.  Wait for her body to be able to fight the infection and get rid of this cold.

We were supposed to meet with the surgeon today. Anthony drove down ready to learn all about surgery, but because we were inpatient Esther couldn't go over to the clinic side of the hospital and her appointment was canceled.  Oh, well I am going to sleep so much better tonight with my own pillow delivered by my amazing husband.  Esther's surgeon did come by to give me a general idea of what her surgery will be like.

It's going to be fairly invasive.  We had initially thought it could be laproscopic, but it will not.  There are some surgeons who remove neuroblastoma laproscopically, but this surgeon (and a world renown surgeon at Sloan-Kettering) believe it's best to open up the patient.  She described neuroblastoma as "sticky" and it tends to stick to anything it touches and a lot of what it touches are veins and arteries.  She feels much better about getting as many cells as possible with the least damage to what the tumor has "stuck" to by opening Esther up.  It will be about 5 hours to get the tumor, lymph nodes that have caught the cancer, her adrenal gland and there is a small possibility she'll loose her kidney.  She said only about 5% of neuroblastoma kids actually loose the kidney and it has more to do with how much the tumor has effected the connective veins rather than the actual kidney.  Esther will have 5-7 days in the hospital.

I learned that Esther is the first child at Children's to go through this new protocol, including having surgery after the 4th round of chemo.  Usually it's done after the 5th round.  As the doctor said today, Esther's treatment is very complicated.  One of the nurses this week was telling a nurse she was training that Esther's treatment is one of the most intense she's ever heard about.  Honestly, we are feeling this intensity.

Today was a recovery day for me.  When Esther was bleeding so much yesterday I just dealt with it.  Today I felt it.  This cancer thing is scary and weighty and exhausting.  A friend sent me a message today to let me know after learning about Esther's nose bleed she stopped at a blood drive.  That blessed me.  She thought of Esther while she donated the blood, such a sweet friend.  Whether or not the blood goes directly to Esther, please consider donating blood.  You can do it here at Children's Hospital in Denver or in Fort Collins or where ever you are.  Not to be all dramatic or anything, but without those platelets and the blood Esther received yesterday, she may have died.  You could literally be saving someone's life.

I am encouraged by God's faithfulness to have Anthony here yesterday and that Esther's surgery is a week later than we anticipated.  We will have an extra week to be home...as long as these fevers go away.  Another cool thing is that in the morning before Esther's bleeding yesterday, four people sent me emails with verses or songs.  They all had similar themes and blessed me.  God knew I would need the extra encouragement with such frightening and exhausting days.  He set me up for success...that's the God I know.  He does not set us up to fail, He is gracious and merciful.  He prepares us for the paths we will cross.  He is tender and loving.

The Clouds Ye So Much Dread

Ye fearful saints, fresh courage take,
The clouds ye so much dread
Are big with mercy, and shall break
In blessings on your head.
Judge not the Lord by feeble sense,
But trust Him for His grace;
Behind a frowning providence
He hides a smiling face. (William Cowper)

On Sunday evening, I left thinking that we might endure another round of treatment without a hospital stay for a fever. It had been a good week and Esther seemed to be doing well. And it was Sunday, usually the day when Esther's counts would come up and we would go home in previous rounds. I said goodbye a little apprehensively but hopeful that the timing of my work trip for a day to South Dakota had worked out, praying that Esther's counts would be rebounding and for no fevers.

I tried to have dinner at the airport but the restaurant was running too late so I only was able to enjoy a nice beer. That isolated beer coupled with the hopefulness of no fevers for Esther would combine to make my flight a bit unenjoyable! First, I got on the plane and noticed that it was a 2 seat-per-row old school turboprop airplane missing one key ingredient: a bathroom! Second, as the plane was taxiing for takeoff, I got a text from Sam saying they were heading down to the hospital. My first thoughts: the worst possible timing ever. And now I'd have to deal with a 90 minute flight both frustrated and feeling helpless for Sam and Esther and my older kids as well as having to pee extremely badly!

But I'm learning. Very slowly. I tried to work through my anger and fear with God and read a bit of my book without counting the minutes. My trip had worked out exactly how I hoped it wouldn't. I also felt a cold coming on and a night of less sleep ahead. Esther and Sam checked in and her fever went down and I was thankful for Aunt Robin and Uncle Casey. Sam and Esther would have a good low key day yesterday of catching up on sleep and rest and I would spend a nice day with my coworkers on a boat on Lake Sharpe.

Today, God would much more clearly intervene. My flight was supposed to leave at 6:30am and get into DIA at 7:20am. That flight was cancelled. After I had already got up at 4am to be there. Instead I was to be on a flight an hour later that would have a connection. Instead of arriving at 7:20am, I arrived into DIA at around 8:30am.

Then I, for some reason, was intent on finding a breakfast burrito for Sam and I before I went to the hospital, visited, and swapped vehicles. Qdoba sounded really good. An hour later (!!) and I found the Qdoba only to see that this one did not serve breakfast! I found another local place and headed on to the hospital. By the time I arrived, it was 10am.

Almost as soon as I arrived, Esther's nose bleed to end all nose bleeds began. We already knew her platelets were only at 14 (normal = 150-300) but her ANC was already back up to 140. Normally, we can apply some pressure, even with her low platelets, and get the bleeding to stop in 5-10 minutes. A half hour later and pressure was not working. An ice pack seemed to slow the bleeding for few minutes. We then tried Afrin, a nasal decongestant that usually helps, and it did appear to finally stop the bleeding. And then it got scary.

The bleeding started again and she then threw up almost a bucket full of blood. I don't mean to gross you out, but it scared the hell out of me. In the past few months since her diagnosis, I have never been more scared. I have never seen that before. The tears started flowing and she threw up 2 more times as the resident doctor engaged in our situation and I was just trying not to lose it. Her nosebleed continued and she got paler and paler. I felt better after they told us the blood she threw up was all likely from the nosebleed and they got her platelet transfusion going almost immediately as the more experienced doctors jumped into Esther's situation as well. In the midst of this, Esther had to go potty and nearly passed out as Sam was helping her. We got her back to her bed and the bleeding stopped and things finally settled down as she received platelets.

I have never felt as fearful for Esther or more worried in the moment. My stomach has been queasy and messed up almost all day until now. Normally I can hold it together when things get crazy. In other previous situations with Esther, I have been able to push ahead. Today, I barely kept from just melting down.

But I realized how easily I could have not been there. It would have been awful for Sam to walk Esther through that by herself. If I don't go on my trip, I'm likely working when it all happens. If my flight left an hour later on Sunday night, I probably would have cancelled it and headed straight home and, again, would have been working today. If my flight this morning had left on time, I probably would have brought breakfast and left before Esther's nosebleed started. If I would not have been so intent on finding a Qdoba, I also would have gotten to the hospital earlier and probably left before she started bleeding. It was extremely hard to see Esther go through that and it was an exhausting day, but I am so thankful that I was there with Sam for it. I am so grateful. I would rather have been there today for Esther's bleeding than be home the last 2 days when they headed in. God knew that and worked it out in spite of me.

Our God is in the heavens;
he does all that he pleases. (Psalm 115:3)

The last few days seemed to all be God's frowning face. The worst timing. Circumstances working against us. But, at least this time, God's grace was so clear by the end of it. He wanted me to be there. He knew what would happen and let Sam and I both be there together for that scary time. God worked it out exactly for me to be there the exact minute I needed to be. God does whatever He pleases and that is a very good thing.

One might try to explain the timing of today by random chance. Maybe it just worked out. But putting my faith in random chance has never been very appealing to me. My God is sovereign and intervened today for our good. He worked against my initial wishes. He timed it all in very clear ways that at first felt like he was doing the exact opposite of working for our good. But behind a frowning providence, he hides a smiling face. I was trying to trust him for his grace but I judged with feeble sense.

Today was a hard day. But Esther is ok and things settled down. This evening, she spiked another fever that will likely keep her there at least another day, until probably Thursday. But I will trust him for his grace. Fearful today, fresh courage I will take! The clouds ahead seem worse and dreadful but are big with mercy and will break upon us with blessing!

Bless our God, O peoples; let the sound of his praise be heard,
who has kept our soul among the living and has not let our feet slip.
For you, O God, have tested us; you have tried us as silver is tried.
You brought us into the net; you laid a crushing burden on our backs;
you let men ride over our heads; we went through fire and through water;
yet you have brought us out to a place of abundance. (Psalm 66:8-12)

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Fun Things for Esther!

It's been a rough day, maybe top 5 scariest days...we'll write about that later.  For now I wanted to tell you more about some fun things.

A few posts ago I told you all about how our friends from the twins club sale are organizing a couple fundraisers for Esther.  They've collected donated baby & kids stuff to sell and are putting together an AWESOME drawing.

There are some really great things to win...a weekend in Summit County, gift cards to several businesses, paintless dent repair for your car, riding lessons, music classes, and other classes, teeth whitening, lovely handmade items, food & more!  Thank you to everyone who has been so generous in donating amazing gifts to support Esther!

The way it will work is you can buy a ticket for a suggested donation of $1 and put it in the drawing for the prize of your choice.  Simple!  Guys, there is some really great things to win and it will help us a lot with Esther's care.

The sale is this Friday and Saturday at The Ranch in Loveland.  It is parking and admission are free and lots of great deals are to be found for your family.  You can shop from 10am-8pm on Friday, September 21 and from 9am-2pm on Saturday, September 22.  On Saturday many of the items are 50% off.

Also, if you're in Ft. Collins, they've organized a day at Chick-Fil-A October 11th where 20% of their the sales from all orders to support Esther will be donated to our family. 

Waiting It Out

We made it to the floor LATE last night and were greeted by several familiar faces.  My heart is growing so fond of these nurses.  The nurses we know all eagerly stopped by to say hi to Esther and see how it's going.  I feel loved here and that certainly helps make the stay better.

We watched a lot of TV this morning, my eyes were burning with the lack of sleep and Esther was pretty low key.  She took a long nap this afternoon and a friend brought us a delicious dinner.

Esther's counts came up pretty well today.  Her ANC was 10 last night and this morning it was 43, this is a great jump!  At this point we need to have 48 hours from the time of admit for her blood culture to be complete, her ANC rising and over 100, and 24 hours fever free.  Tonight before bed she was running another fever 100.8.  Esther also has another cold and is in isolation.  Please pay Esther to get well quickly and wisdom on how to avoid these colds.

We'll see, the earliest she could go home is Tuesday about 8pm.  Wednesday we meet with a surgeon to discuss her surgery, which is scheduled for October 1st.  So, we'll see.  Either way, this is shaping up to be a quicker hospital stay than in the past.

Pray for her fever to stay away and for counts to rise!  I am going to bed, the 3ish hours I got last night are catching up as my head is bobbing.  Again, sorry for the typos and if nothing makes sense.  Good night!

Darn Fever

I am writing from the ER at Children's.  We have to be here because it's Sunday.  One benefit to cancer is that you don't have to wait in waiting rooms.  When Esther has her labs drawn she's taken right to a room and bumped up to the front of the list.  Tonight we jumped to the front of 40-50 people who were waiting.  There was one lady who was ticked off and yelled out, "Now, somebody else gets to go ahead! Why do they get to go first?"  I will be honest, it was satisfying to turn the stroller around and show her my bald headed beauty.  Hopefully she stopped complaining.

Esther has had a lowish fever most of the day, between 99.5 and 100.2.  She jumped up to 101.1 and so down to Denver we went.  Anthony was boarding an airplane to for a work trip right about the same time.  Praise God for Aunt Robin and Uncle Casey.  Robin came right over and is going to take care of the kids until Tuesday morning when Anthony gets back.  She's even going to brave Zinnia's first dentist appointment and a filling for Rourke in the morning.  Zinnia is pretty stoked about going to the dentist.  I would just cancel the appointment, but she is SO, SO excited to go because she gets "tube-paste, a tube-brush, flossers, gum, and glubs."  She's seen the loot the other kids get and can't wait to have her own dentist goodies.  The things kids are excited about, right?!

And...Aunt Robin is the bomb-diggity, no?!  Okay...I am totally exhausted and a little slap happy.  I apologize for typos and bad humor.

They began standard neutropenic (ANC below 500) fever treatment with antibiotics.  They gave Esther a bolus (extra fluids) in the hopes of avoiding a blood pressure drop.  Her blood pressure still dropped and she had some of the same shaking she had when she was admitted to the ICU.  As soon as the nurse stopped the antibiotics, her shaking slowed and then stopped.  Last time the doctor explained that is often the body's reaction to a quickly dying infection.  We still have yet to find an infection with all of these fevers...

Esther's ANC was only 10 and her platelets were 7...that is really low.  Her hemoglobin was good, but could be low tomorrow because fevers tend to kill red blood cells.  They transfuse platelets at 10, normal is somewhere between 300-500.  I am SO glad I pushed for the platelets on Thursday, she definitely needed them this weekend and she'll have another platelet transfusion when we get up to our room.  We'll be on 8 again...yea, we can see out the windows!

I think that is all the update I can muster right now.  Here's to a restful night.

A Normal Saturday

Things have been quiet the last few days and we are still home. Esther did need both a blood and platelet transfusion last Thursday. Her ANC was only 121, so we've just been holding our breath, waiting for a fever. She was running a lowish fever Thursday evening, but it went back to normal by the time we went to bed. We were anticipating a fever all day Friday, but it never came. Today she's been playing like a normal 3 year old who is fever free. Could we possibly escape two rounds of chemo without a hospital stay? We are certainly hopeful, but peaceful for whatever happens.

On Friday I was able to join the kids at Classical Conversations. It was so nice to be there, at the same time, familiarity is strange. I often feel out of place in circumstances like that because everything is so different now. I am comforted that God is not different, He is the same. Today Anthony made cinnamon rolls for breakfast and took Zinnia to the grocery store. I took the big girls to get some leggings, a freezer to be able to fit some frozen meals, and a dryer to keep up with our amazing new washing machine, a generous and timely gift from my aunt and grandparents. Thank you for such loving gifts to allow us to get these things that will help make life a bit easier.

This whole treatment plan is about to become far more intense and fast paced. Esther's surgery is scheduled for Monday, October 1st. This is a week later than we were hoping for, but another week of down time is a good thing. We have a pre-op with the surgeon this Wednesday and will hopefully know more of what the surgery will look like. It all really depends on the size of her primary tumor and how much of the surrounding tissue has been damaged by the cancer. We know she'll loose her right adrenal gland, but possibly some or all of her kidney too. They won't really know until they can actually get in the and see the tumor. If it's small enough, it may be a laparoscopic surgery. That would be a huge blessing because she will recover so much easier. We don't have her scans scheduled yet. Esther's oncologist said they like to have the scans close to the surgery, so we'll know on Wednesday.

Depending on how invasive the surgery ends up being, Esther will have 2 to 4 weeks to recover and then she'll have a last round of her "regular" chemo. It will be the same drugs as the time before last. At the end of the 21 days we will head to Cincinnati, OH for her MIBG therapy.

We had originally thought we would take the kids with us, but after learning a bit more about the therapy, it would be really hard on them to be there. Anthony and I will be on 12 hour shifts to care of Esther during the treatment. During our time caring for her, we will pick up some of the radioactivity she is emitting, so that means we can't have any physical contact with other people. It would be really hard on the kids for us to not be able to touch them for a couple weeks. We're working out a plan for the kids to stay here with Anthony's Aunt Candy and cousin, Danika, for part of the time and then with his mom and Aunt Melody for another part of the time. Danika has come to visit during the summers and our kids love her. They will be thrilled to be spoiled by their Grandma Sherry, aunts, and special cousin.

As soon as Esther is not emitting radiation, we will fly back to Colorado, and she will receive some of her stem cells to rescue her immune system. This is a wild card time. Since this part of her therapy is study related, they aren't sure how quickly she will recover from the MIBG therapy. She may need more than one stem cell transfusion. Based on how quickly she recovers, she will have a minimum of five weeks and a maximum of eight weeks to begin her high dose chemo. This chemo will be inpatient and she will have another stem cell rescue. We can expect to be in the hospital about a month in the highly regulated BMT side of the oncology floor. Then we will have to relocate for about 100 days.

After a stem cell rescue following such intense chemo, infection comes easily and can be dangerous very quickly. We need to be under one hour from the hospital. It takes about an hour to get there now, but only in good traffic and good weather. It will be January or February during this recovery time, so weather will be a big factor. There are a couple of homes that are set up with the needed clean environment, but they may not accommodate a family of our size. Esther will have to wear a mask when outside of our home and even be covered by a blanket when riding in the stroller to and from the hospital. She can not be around smoke of any kind and even just a little dust or mildew from a shower or drain can cause infection. So, we'll just have to see what happens. One blessing is that kids under 12 are not allowed in these homes during the winter months, but since we homeschool, they are allowed to stay. We will learn more about this during her 5th round of chemo.

Following this high dose treatment, Esther will have two weeks of radiation and then she will have a month or so before beginning six months of antibody therapy. The antibody therapy rebuilds her immune system and teaches her body to fight future cancers. This therapy is a big deal in cancer research. While it was being studied the positive results were so clear the study was stopped because it was unethical to not give every patient the therapy. Cancer research does not often see such clear results and this therapy is becoming standard practice for children, like Esther, who have cancers with high relapse rates. However, it is scary. She will have a lot of home care and half of the treatment will be pills and shots from home. The other portion will be about 5 days in the hospital for five out of six months. At least two of these treatment weeks will be in the ICU because she needs such close monitoring.

Then we will be done. Then we really learn what it means to trust.

This "done" part has been a fight for me. I have been struggling with anxiety. Last week there was a big cancer fundraiser. You may have seen it, "Stand Up 2 Cancer." Two of the kids on the show had stage 4 neuroblastoma. Taylor Swift sung a song about a little boy, Ronan, who lost his battle. The other little boy, Justin, is from Colorado. I've met his mom a couple times, she gave Esther a present. He has had 4 relapses, I think. Her best friend's daughter also had stage 4 neuroblastoma and is about to celebrate five years, cancer free. She will be cured. There is hope, but this cancer is awful.

I think this year of active fight for our daughter's life is training for us to trust when waiting in the lulls. In many ways it is easier to be hopeful when you're doing something. But in those times of quiet, times of waiting, that is the hardest. It is true of each of our lives.

We are doing alright, learning a new normal. We are not all that brave, we don't have another choice. Maybe that's not true. We could try to do this on our own. God is good and kind and hope is found only in His goodness. Glory to Him alone. I read bits of Ronan's mom's blog and it was dark, depressing. That is life without Christ. We are weak, so weak. Our journey would be hopeless without the Lord. The only hope or joy Ronan's mom had was in his cure, the agony overtook her and won. I get that. I can't imagine anything more painful than watching your child suffer and then die. God knows this, He did it. It is utter devastating and will destroy us if our hope is only found in an outcome begged for on calloused knees. Our hope can not be planted upon Esther's recovery. While we absolutely YEARN for this, we know God has her in His care and that all hope is not lost, even of she dies. She is a gift to us, a blessing and reward for the time He has ordained. The pain of it all is more than I could ever have imagined, but there is so much peace found in His goodness and love. If Esther dies, it will be scarring, but that is not the end! There is new life for her and for us in heaven where the will be no more tears, no suffering, no death. It is freely offered to all of us through Christ's death and resurrection. Our strength and hope is founded on that truth, not on the circumstances of this journey. Praise to Him. Praise to Him.

 

 

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We're still home!

Today marked 4 days post chemo for Esther.  So far, so good.  She hasn't had a fever, is regular (a big deal for her), and is happily playing her days away with Zinnia.

The older kids and I have enjoyed getting back into a school routine and I'm learning about being interrupted.  You'd think with five children I'd be good at it, but I'm not.  I am a start to finish kind of girl.  I don't like being interrupted or having to put something down partway through.  It's been tempting to just toss school aside because it might be interrupted due to a hospital trip, but God is revealing a new work in my life.  He's teaching me flexibility and peace in not getting through the agenda.

I am thankful for this lesson.  I have been far from getting everything done with each child, but that's okay. Lessons in caring for each other, obeying mom quickly, and loving your siblings are far more valuable than Proper Nouns and the Kingdoms of Living things.  I see the kids thriving and full of eagerness as I've just gone with the flow.

Tomorrow Esther will have lab work done and a probable blood transfusion.  Her red blood cells were really low before chemo and it's been a week since the first day of her last chemo treatment.  Her blood counts will be getting low as the 10-14 day bottoming out, nadir, is coming close.

We also have an appointment set next Wednesday to meet with the surgeon who will be removing Esther's primary tumor, adrenal gland and anything else that may have been damaged or is infected with cancer cells.  I am feeling many of the same feelings, that knot in my stomach and tension in my throat, of the first week when we knew something was wrong. I know Esther has cancer, but what if the tumor is still too big?  Will she have to lose her kidney?  What if they find another lesion?

The thing is, they may.  She might lose her kidney.  She might relapse.  God knows and I do not.  I was praying about Esther earlier this week and I felt like God was telling me that He has a plan.  He has a purpose for her life.  He will use her life to impact others.  It will contain suffering and she might die, but this is not in vain.  He will bring a return on her life no matter the outcome.

For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.
Jeremiah 29:11

Home again

We got home today about 6pm. We were greeted with excited smiles and hugs. Esther was eager to play with her brother and sisters. The resiliency of a child is amazing, we could tell her body is aching, but she cheerfully went to play. She didn't last all that long, but it was nice to see her play. Being home is so good for her.

I'm tired and ready for a night of rest without IVs beeping, nurses checking vital signs, and my super soft sleep number bed.

 

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Better Day & A Way To Help

First...today was a MUCH better day.  Still not a lot of eating and drinking, but no vomit.  Esther was awake and more chipper today than yesterday and is sleeping peacefully tonight.  We should be headed home tomorrow afternoon/early evening.  One specific thing to pray for is that Esther has had some diarrhea.  We expect to see her constipated with the chemos she's had this round.  I'm not too worried, but pray against infection.

Over the last 3 years I've had the opportunity to get to know a new group of friends.  It has been a gift to be apart of the Ft. Collins Parents of Multiples Club.  I have met some dear friends through this organization.  They have surrounded us with so much love and support.

I was supposed to be the club president this year.  It was a role I was so excited for as we've worked hard the last few years to place funds and structure that will be a real benefit to families with multiples.  I've been able to be a part of the effort to raise funds for the club through the Grow With Me Kids Sale.  This consignment sale has become near and dear to my heart as I've invested a lot of time and effort into its success, and I see it as such a ministry.  It's a place I've been able to serve, to love others, to express some of the talents God has given me, and it's a neat way for families to make and save money.

The next sale is in a couple weeks, September 21 & 22nd, at The Ranch in Loveland.  You can visit the website for all the details of when you can shop.  What I wanted to tell you about is something some of my sweet friends are organizing for Esther.

First, the sale has some volunteers who have offered to tag and put out any gently used baby, kids & maternity gear that is donated and they wanted to give the sales from these items to us to help with Esther's care.  If you have any baby, kids & maternity clothes or gear, you can donate it to the club to sell on Esther's behalf.  This is so sweet and a big effort.  If you don't have any stuff to give but want to help, you could volunteer at the sale.  Please email growwithmesellers@twinsntriplets.com if you'd like to help by donating your stuff or to volunteer some time.

If that wasn't cool enough, there is going to be a raffle where shoppers can buy tickets for $1 to win a prize of their choice.  We are looking for family friendly businesses to offer products, services, gift certificates, etc. or handmade goods to raffle away.  If you have anything you could donate toward this effort, you can email me.  UPDATE:  These are some smart ladies, folks!  I just learned that if you don't have a business but would want to donate a gift certificate to raffle off, you can do that too.  

Finally, this is a great sale and community event  It's open to the public to shop or sell.  There is still lots of time if you'd like to sell.  It's a fundraiser for the Ft. Collins Parents of Multiples Club, the NICU at Poudre Valley Hospital, the March of Dimes, and our friends are so generously doing extra work to benefit Esther.

Sick, Sick, Sick Day

UPDATE: The video didn't work...it does now.  SUPER cute!

Remember that halved dose of anti-nausea meds? Yeah, she needed that other half. This morning Esther began to throw up pretty much as soon as she woke up. She could't keep anything down. I asked to have her meds changed to IV doses rather than oral so that something would stay in. After giving her the first available med, benadryl, this is what Esther did for over 4 hours.

Look at that ROUND, without a bump head. I guess one perk of chemo is that you get to take sleeping pictures of your kids beyond the baby stage.

When she woke up, she had been given a full regime of meds but still threw up at the slightest bit of water, saltine, and even the smell of my dinner caused her to loose whatever bit of liquid was left in her tummy. I was both overwhelmed with heart break and adoration when she said, "I saw-we Mommy." When I asked her what she was sorry for she replied, "I saw-wee I frowed up too much today." I assured her it wasn't her fault and that I loved her even if she was "frowing up."

We brought some VBS videos and last night before all of this puking began, Esther ministered to me while she was singing these songs. Enjoy such cuteness and TRUTH! I was reminded on this sick, sick, sick day...

"You, You, You! You can trust God!"

"I've got to think, think, think. Think about the goodness of You, my God. Because I know, know, know, no matter how it feels, I've gotta trust in You. I will trust in You!"

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Feeling Rusty

Esther's chemo went (actually is still going) pretty well today. This cycle has three drugs. The first drug she's had before, but at a much smaller volume. It was a one hour infusion, but this infusion is a 6 hour infusion. The second is just a push through her IV, it takes just a minute or two. The third drug is a 72 hour infusion. One of the side effects of this chemo is heart damage, so I am assuming they are administering it very slowly to protect her body. Ugh... She also has to take a different medicine to help her body process and get rid of the chemo so it doesn't do other damage. It's all just yuck!

She hasn't been too nauseas and just got sick once. There is a dosing issue with one of her anti-nausea meds that I need to address tomorrow. A new nurse practitioner changed the dose to half of what we've given her the entire time she's been having treatment.

Esther caught the cold the rest of our family had, so she's had two colds in the last few weeks. Because of the cold she is in isolation. This means all the staff wear gowns and masks when they come into our room and that she can't leave. Bummer because it is so nice to be able to go for a walk.

Having a two week break from time in the hospital has been nice. I am feeling a bit rusty with all of this hospital life and just exhausted. For example, I'm waiting for water. One thing about the 8th floor is that Esther can't drink the water because it's not filtered. I'm supposed to order water from room service but I forgot and now it's taking forever to arrive. She's thirsty and doesn't want to go to bed until her water is full. She needs to drink, so we wait for water...

I was struck by this verse today that we've memorized thanks to Steve Green's Hide 'Em In Your Heart CDs... Proverbs 20:11. "Even a child is known by his actions, whether his conduct is pure and right."

Esther has a witness at this hospital. The staff knows her and is eager to interact with her. Last time we were here one of the nurses took her lunch break in our room. Her nurse today said that she's heard so much about Esther that she was so excited to meet her. The infusion room nurses joked that they were going to stall moving her to the inpatient side so they can hang out with her a bit. The rounding impatient oncology doctor said she was so excited to see Esther's name on this list and had been looking forward to seeing her all day.

Esther's actions are known at this hospital. This is completely God's grace and I don't want to make it an idol or expect her to be a circus bear and perform. My prayer is that we would display God's love to the hospital staff not a performance/behavior show. God has given us a sweet little girl and it is only His doing.

Today was Thomas' last day of treatment. I think there is a video of him playing his viola, but I can't watch it in the hospital for some reason... This was encouraging. His mom, Emily, said of the beginning of their journey, " In January, September seemed like years and ages from where we were. It felt almost suffocating in its remoteness." I so understand this and it's nice to see that finish line approaching.

This also got me thinking about how hard it must be to be a health care provider for oncology patients. You get to know them so fast and intimately. You see them often, you know their families, their struggles, often their daily lives are shared with hospital staff. They know what foods you like, your favorite activities, TV shows, your favorite movies. Some oncology patients die, the rest recover. For the care providers there is a break in the relationship with every patient. I'm sure the reward of saving someone's life is great, but there must be a sting when the relationship is ended. These people care, physically and emotionally, for the patients and their families. I admire and respect them greatly.

Water's here...it's time for bed.

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Looking For Manna

We've had a quiet few days. We've celebrated two birthdays! My birthday was made special by decorations handmade by my kids and gifts all wrapped up. Esther gave me a matchbox car, Rourke gave me a purple crayon, his wallet and nearly all the bills from his piggy bank, Zinnia gave me Frannie's purple necklace (she immediately was horrified that Zinnia gave it to me), and Frannie gave me a flower from her dress. Lydia was sleeping during all of this gift hunting and wrapping, but she drew me a pretty picture of me and Anthony on our wedding day. Rourke was so sweet, when I asked him if he was sure he wanted to give me such a gift he just smiled and gave me a hug. I'll sneak them back into his piggy bank in a few weeks. Maybe I'll let him take me out for ice cream or something though. I was also blessed by a surprise gathering for dinner with some friends a couple days before the day and blew out candles on a delicious white chocolate cake with raspberry sauce. I think it is the best cake I've ever eaten. Kyle commented that this from-scratch cake's secret ingredient was handcrafted love. I agree. To celebrate Anthony's birthday, we enjoyed dinner with Kyle at one of our favorite restaurants, Bisetti's.

I've been fighting the cold for the last couple of days and am very scratchy voiced and feeling pretty crummy. We had to miss our first day of school. The kids were troopers and thankfully I've got a little experience teaching, so we did our own Classical Conversations at home.

The cold I have (and the other girls have had) is different than the sniffly cold Esther had shortly after chemo. I hope we aren't passing around two different colds. So far the cold has cycled through all of us except Anthony and Esther.

Esther's chemo was bumped back a day and won't begin until the 5th. Because of the holiday weekend, Tuesday is a really busy day in the infusion center, so we'll start Wednesday. This round will be a bit intense. One of the drugs is a 72 hour infusion and causes mouth sores. I am thankful for the extra day. It's an extra day to heal, and extra day to do school, an extra day together. Please pray Esther does not get this cold and that I am well before we have to go. I'm not sure what we'll do if I'm sick.

It has been bittersweet to be home. I wrote the following in an email to a friend...

Being home these last (almost) two weeks has been both a relief and really hard. As the summer has been so non-stop, I haven't had time to really grieve the time away from home. To live in it a bit has been so disorienting because it just feels like we're playing house. I find my heart hard and fearful. I've been afraid to really dive in and give myself to my family for fear of it being taken from my grasp. How can life be both so normal and so wrong at the same time? God is working on me...reminding me that even my family is in His hands alone. He's made me a wife to Anthony, a steward of my own children, and it's in His wisdom to allow me to function within those roles for whatever amount of time is best. Working through a bit of school this last week has been with a lump in my throat, fighting tears. I just want to be my kids' mommy, to love them, cook for them, teach and train them. I do not want to share them, to farm them out with busywork to occupy their time while in others' care who are schooling and caring for their own children.

I imagine it's a bit like PTSD...when you're just surviving in the stress, the chaos, you make it. The breakdown happens after the circumstance has been calmed.

I read yesterday and was comforted:

"We are pressed on every side by troubles, but we are not crushed. We are perplexed, but not driven to despair. We are hunted down, but never abandoned by God. We get knocked down, but we are not destroyed. Through suffering, our bodies continue to share in the death of Jesus so that the life of Jesus may also be seen in our bodies." 2 Corinthians 4:8-10 (NLT).

A friend who is fighting breast cancer shared this with me on Monday. It's on my fridge and on my mirror and on the school room white board.

From The Message, II Cor 4:16-17

"On the outside if often looks like things are falling apart on us...on the inside, where God is making new life, not a day goes by without his unfolding grace. These hard times are small potatoes compared to the coming good times, the lavish celebration prepared for us."

This dying is SO painful, but He is making new life through each of us, each soul in our families. The stress of being hunted by illness, by sorrow, is consuming, but in it we are never abandoned by God.

I re-read today in "One Thousand Gifts" by Ann Voskamp, "Grace, it means 'favor,' from the Latin gratia. It connotes a free readiness. A free and ready favor. That's grace."

She says a few pages later in reference to the Isrealites, wandering in the desert and losing their gratitude and amazement of God's provision of manna to eat, "I think of buried babies and broken, weeping fathers over graves, and a world pocked with pain, and all the mysteries I have refused, refused, to let nourish me....Would I really choose manna"

As I've been surprised by a new grief on this journey I appreciated the exhortation to let God's free and ready grace nourish me. It is everywhere and I have a choice. I can allow my heart to be bitter, hard, self-preserving or I can choose to feel, to look for that ready grace. I can choose to not worry about tomorrow, to dive in and enjoy the ordinary moments God has given. I can be nourished and amazed by the miracles and mystery of manna, that food that appears each morning, sweet like honey. This was sweet manna to my heart this afternoon. May I live like these girls, may I dance and twirl at the joy of chasing my sweet girls in a game of tag because today I can.

 

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