"No, get the beer."

Yesterday I almost wrote a post that would've been titled "Worst. Dressing. Change. Ever." It would've been sad and emotional. Instead a crazy storm came through Ft. Collins, and somehow running around like a maniac in the sideways rain and hail to rescue my potted flowers lightened my mood.

That's kinda how the last couple of weeks have been, a bit of an emotional roller coaster. I think it's what happens in these and other situations of loss and grief. You just go along and then all of a sudden something happens that brings it all back. Looking at beautiful pictures my friend, Sarah took last winter before Esther's stem cell transplant, at a beautiful little bald girl and I can't believe that was ever our real life.

Yesterday with the worst. dressing. change. ever. After it was finished I had to leave and go for a drive because I was just so mad and sad and angry and exhausted from a week with a sick kiddo. Frannie came down with something that put her in bed for three days with a fever, vomit, and a ton of Netflix. She's currently going through iPad withdrawal, but I think she'll be okay. Praying no one else gets sick, so far so good. Now that I said that, if I was superstitious, I would ask you all to knock on wood. Go ahead, if you want.

Esther is doing pretty well. She's still tired, but her appetite is picking up, so hopefully that will help with her energy levels. Tonight she was quite the comedian...

 

Now, about that dressing change...we could use some prayer for healing and no infection there. Part of Esther's regime right now is Accutane. It's really amazing how this whole antibody therapy works together. One of the roles of Accutane is to mature new cells. Neuroblastoma is a cancer that develops when baby nerve cells don't mature. Accutane helps the nerve cells in her body to mature. Anything that doesn't mature properly is targeted by her own immune system during her inpatient antibody therapy. Cool huh?!

A side effect of Accutane is dry skin. Esther's skin is horribly dry. The first three rounds of Accutane only left her face/lips dry, but this time her whole body is effected. Add in the heat we've had the last week and a house with no central air, it's a sweaty, dried out skin mess. One area that is most effected is her Broviac site. The Broviac is a central line, she has two tubes that come out of her chest that are covered by a big, sticky, clear bandaid...the dressing. This dressing is changed once a week and if pulling the super, sticky tape off of dry, irritated skin isn't torture enough, the skin needs to be cleaned with a stinging, alcohol based cleaner called chloroprep. This usually happens on Mondays. So, last Monday, I changed the dressing, and her skin was very irritated. She's really good about not itching it in the traditional sense, but she'll rub the dressing with the palm of her hand all day. She rubbed that dressing up THREE TIMES in less than 24 hours. That means peeling it the rest of the way off three times and then cleaning her now open wounds with the most stinging liquid you can imagine.

Yesterday I talked with nurses in the clinic three different times, trying to figure out if she needed to be seen and if there were any other options or ideas to aid in the healing and ease the burn of the dressing change. We came up with a plan using some of the supplies we had at home, one of which was iodine. The idodine was great, it didn't burn, kills all the germs, yippie, right!? Nope. Iodine can't stay on the skin, it needs to be cleaned off. Because we couldn't get sterile water without a prescription (not kidding), I had to use a different alcohol swab. Iodine doesn't wipe off all that easily, so I ended up needing to wipe over and over and over. On open wounds. I should've just used the chloroprep again. She did so well, but it was heartbreaking. It has become normal for my little girl to just sit still, not move away, shake and scream in pain. Then her tears dripped down on the skin, and I had to clean it again. It was horrible. After it was over, shaken and tearful myself, I told Anthony I needed to get out. He made dinner for the kids, and I left for a drive.

I picked up some Chipotle and was on my way home when I saw the low, swirling clouds below the thick blanket of black, stormy sky. I drove as fast as I could and called Anthony on the way. Our conversation went something like this....

"I'm almost home. The weather is crazy out here. There are branches flying everywhere. It's going to hail."

"I know I'm watching it. It's still clear here," Anthony replied.

"I am racing the storm, it's coming fast. We need to cover the garden. I can come home and help you cover the garden, or I can stop and get the beer."

"No, get the beer."

Anthony got the garden covered, and I pulled in the driveway as the hail began to fall. I dropped the burritos and 90 Shilling on the counter and started running after my flower and herb pots. It was crazy and kind of fun. Our garden and flowers all survived. The beer and burritos were good.

I was SOAKED!

 

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This was one year ago

Saturday is one year from Esther's official diagnosis. We had been actively investigating the bump on her head for a couple of weeks, hoping for something benign, but by this time we were pretty sure it was cancer. Knowing Esther was either going to have a huge chunk of her skull removed or that she had cancer, and also knowing that memories are fickle, we wanted to have some photos taken.  Honestly, I didn't know what the future held, and I didn't want to forget the details of my sweet little girl.  Our sweet friends, Chad and Charity, dropped everything and did a fantastic job capturing our family.  These photos have been a treasure to me, thank you friends.

Overall, Esther is doing well.  We should hear soon the results of bloodwork that tests the functionality of her immune system.  Although her bone marrow has been producing the various types of blood cells, it takes time for them to be functional following high dose chemo and stem cell transplant.  So, at 180 days (about 6 months) post transplant, they test the cells to see how many there actually are and how they will respond to infection.  One area I need to ask about is her red blood cell count.  It is low and hasn't really rebounded following her transplant and radiation.  Normal is 12.  Esther has been somewhere between 8 and 9.  They do blood transfusions at 7, so this is low.  She is tired and frequently will ask for a nap or sometimes just lay on the floor and watch what is going on around her.  Her last inpatient antibody therapy was scheduled for the second week of July, but we were able to push it back a week so I can attend training for our homeschool program, Classical Conversations.  I'm praying this extra week will give her a boost to gain some strength.

Sleepy girl in her movie star sunglasses.

Going Home!

Sleeping beauty slept until almost 10am.  

We are in the car and headed home!  Esther's feeling pretty crummy today and is really puffy. This is how she felt on the first day if this course last time, so I'm really happy we're done. 

Thanks to our special 7th floor visitors. Esther just told me she was really happy you came down. 

One more thing...there are only two more days to take advantage of the early bird rate for the Kids Cure 5K, July 28th. We love for you to join us!  www.kidscure.com. 

Today is the 4 Day

All week Esther has been counting down the days until she goes home. "Today is the fwour day and tomorrow is the fwive day. I go home on the fwive day."

She's done well last night and today, pretty feverish and dealing with diarrhea, but those are expected with the IL-2. Her blood pressure has been on the lowish end, but not too bad. She'll finish with the infusions about 7 in the morning and we should get to go home around lunch time. Woo-hoo!

She has been having an early morning breakfast, like 2am. I'm hoping for a full night's sleep and that she'll wake up hungry in the morning instead!

 

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Wanna Join Team Esther at the Kids Cure 5k?

Here's the deal. If you've been following our blog for a while you know how much of a blessing Brent's Place was, and continues to be, to our family. July 28th is the 25th Annual Kids Cure for Cancer 5k Benefiting Brent's Place, and we would LOVE to see you there. You will be encouraged to see some of the other families who have called Brent's Place home, and our kids will be more than happy to introduce you to you the friends and staff we met during our stay. Bring your kids and enjoy a fun walk/run for a great cause.

Sunday, July 28th, 2013 at 8am

Washington Park in Denver

All the details can be found HERE.

You can join any team, but we'd love if you joined "Team Esther!"

Can't join us the day of the race? There's a "Homerunner" option for you to still participate in the fun.

Don't run? No problem...you can walk too!

The early bird discount ends this Saturday, June 15th! Adults are $25 and kids are $10. After the 15th, registration goes up for adults, but kids 12 and under will remain only $10. Following the race is a pancake breakfast and fun activites for kids!

We'd love to have you join us to support Brent's Place, and it'll be an Esther's-almost-done-with-treatment celebration!

Esther has had a good day so far, and last night was fairly smooth, she only needed one bolus of fluids! Today we colored and stenciled and put stickers on what she colored and played with Alli, the child life specialist. Tomorrow's the last day of infusions and Friday we'll head home. YAY! She's even still eating a bit. See...bacon. Breakfast, lunch, and dinner. When I lift the lid of the giant plate warmer, I can't help but think tapas, for some reason.

Sweet puffy face.

 

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Hoping for a better night's sleep.

Last night Esther did have a bit of a hard time as her blood pressures dropped. They gave her the allotted three fluid boluses. After a fit and some food, her blood pressure came back up, and she was able to finish the infusion. There's a plan to lower her pain meds tonight while she's sleeping to try to stay off those low blood pressures and keep going. I hoping to get to sleep quickly tonight because they are already pretty low and she's only 11 hours into the 20 hour infusion.

She's had a few fevers, one she even cried off because we had to change the dressing on her port. That is pretty painful for her as the dressing is very sticky on her skin and always leaves it a bit raw. Not as huge of a deal when it's coming off for good, but if the port is still being used, the site needs to be cleaned and the chloroprep used to clean the area stings.

Here's a picture of her puffy, puffy face and her "cwazy haywr." It's fun she has hair to be crazy.

 

 

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Boundary Lines

Esther traced the lines of a stencil for over 5 hours. She has done fairly well today, despite quite a bit of pain and some nausea, but her vital signs have been overall stable. She's had a few low blood pressures and her heart rate was high for a while, but it has come down with pain management. The days will be 20 hours long and we should hopefully leave Friday afternoon. All of her real reactions and problems have come at the end of the infusion, so even though she's been hooked up for about 12 hours, she has a long way to go this first night. Please do lift her and her caregivers up...that she would make it through this week without the issues we had last time and that our caregivers would have discernment and agreement on her treatment. There's been a couple lines of thinking on what to do when her blood pressure starts to drop. Really, it's a rock and a hard place. One of the things they do to increase her pressure is a bolus (fast infusion) of fluids, but one of the issues with low blood pressure is that her capilaries can't always handle the fluid, and it leaks into her body, including her lungs. Extra fluid can be an issue as well. This treatment is so important to neuroblastoma kids, the benefit outways the risk, giving these kids a 25% high rate of cure. When the odds are 40% at best without it, you definately want to bump it up to 60-65%.

So, as Esther coped with her pain by drawing the boundary lines of this stencil, I was reminded of Psalm 16...

Lord, you alone are my portion and my cup;

you make my lot secure.

⁶

The boundary lines have fallen for me in pleasant places;

surely I have a delightful inheritance.

⁷

I will praise the Lord, who counsels me;

even at night my heart instructs me.

⁸

I keep my eyes always on the Lord.

With him at my right hand, I will not be shaken.

Psalm 16: 5:8

Today I was listening to a song "Broken Hallelujah" by The Afters. You can watch it at the end of this post. It's a good song, opening with lyrics that have resonated with me many times in my life, but strangly, not completely over the last year.

"I can barely stand right now. Everything is crashing down. And I wonder where you are."

There have been many times I could not stand as everything has crashed down, but I've never wondered where God has been. I know He's been with us. Every moment. This is not true of my entire life as a Jesus follower, there have been many, many times I've wondered where God was. His kindess has been tremendous. The song goes on....

"Even though I don't know what your plan is,

I know You're making beauty from these ashes.

 

I've seen joy and I've seen pain.

On my knees, I call Your name.

Here's my broken hallelujah.

With nothing left to hold onto,

I raise these empty hands to You.

Here's my broken hallelujah.

You know the things that have brought me here.

You know the story of every tear.

‘Cause You've been here from the very start.

Even though I don't know what your plan is,

I know You're making beauty from these ashes."

 

So good. I can't explain, words completely fail, but there is so much beauty from the ashes of cancer. Through it all I've seen pain and so much joy. My hands are empty now, and it's okay. So much of my life has been gathering up the fruits of my capable hands, hoping they would be an acceptable offering to earn my nearness to God. Yes, Jesus' sacrifice covered my offenses and sin, but I still wasn't welcome at the feast. God would put up with me because He is God and offers this gift of salvation that I recieved, but not because I was really loveable.

I think many of us feel this way. It's just not true, and it took cancer to show me that God really does love me. I am grieved that I spent years believing that God accepted me out of duty. That His love, kindess, presence, and help was for everyone else. I have no idea where this line of thinking developed, but it was where mind and heart lived. He knows what brought me to that place, and He knew he would make beauty out of those ashes of doubt.

This lot, this hand we've been delt, it is hard. It just sucks. But I haven't wondered where God is, because I know, He's been right here, with us. I've just known, deep in my soul, known. This is not a testament to my faith, but His faithfulness, please know, I'm just not that holy. It has been a grace, a complete grace.

At the end of the song, they sing,

"When all is taken away, don't let my heart be changed.

Let me always sing Hallelujah

When I feel afraid, don't let my hope be erased

Let me always sing Hallelujah.

Let me always sing Hallelujah."

Though Esther still has a few months left until she's finished with treatment, we are nearing the end. This is a prayer for after the end...when all this is taken away and our lives are not consumed with labs, treatment, pills, hospital stays, scans, and worry of relapse, please "don't let my heart be changed." These boundary lines are not easy, but there have been pleasant gifts God has given us we would be hard pressed to recieve any other way. With Him at my right hand, I am not shaken. Let me continually see Your boundary lines, see You make beauty from ashes, and sing a broken hallelujah.

 

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Seven, All Together

Today was Frannie and Lydia's seventh birthday.

Seven.

While I don't remember much of the year they were six, I vividly remember the wonderful tea party we enjoyed to celebrate their six years here. Somehow the worry and stress of a growing lump on Esther's head has etched the details to my memory.

As I've thought about Frannie and Lydia turning seven, I've grieved the loss of the year they were six. But as I look at this collection of photos from a year ago I am so thankful Esther is here to celebrate with us as they turn seven.

Today was all about the cake.

 

Coffee Cake with the Happy Birthday song is our morning tradition.

 

The wonderful cakes Zinnia, Esther, and Rourke enjoyed while we were at Brent's Place were from a bakery that donates cakes to the kids staying there. Firstly, they are good. Like gooooooouuuuuud. Secondly, they are amazing creations. Thirdly, I wanted to eat a DBar cake again. And fourthly, Lydia and Frannie asked if they could have a special cake like everyone else. Of course we said yes, I mean it was a good reason to eat some really delicious cake.

Frannie requested a purple cowgirl cake and Lydia wanted a pink tea party cake with a pink lily. I called in their requests last week, and they turned out perfectly.

 

 

 

 

 

As Frannie and Lydia were getting ready to blow out the candles I was struck how perfect these cakes were for them as individuals. When we were choosing names for our kids were considered character traits we would desire to see our children possess. We choose Lydia largely because the Lydia of the Bible was so kind, thinking of others, delighting in hospitality. Her middle name is Ruth, also after Ruth of the Bible, that Lydia would be a faithful friend to the people God puts in her life.

Lydia is most pleased when she is helping others. She will often just come to me and ask what she can do to help. She asks to help her sisters all the time, getting them dressed, playing with them in the bath. She chose a tea party cake, that is sweet, inviting, and full of special little details. Lydia is in the details, making life special to those she interacts. She is thoughtful about the details, wishing to bless others. God is blessing that desire to see this character in her life.

Frannie's cake is perfect for her. She is loud and lives life honestly. There is no hiding her emotions and how she is feeling. Frannie feels every bit of life, her empathy is beautiful. Francesca means "free." Her middle name is Elizabeth, after John the Baptist's mom. The meaning we were encouraged by is "set apart." Frannie brings brightness, laughter, and honesty to our home. She is creative, feels every good or bad thing around her, and wants to be known, understood. I am excited to see what God has planned for this free bird.

 

It was a great night celebrating our two special girls. All together.

On to an Esther update...

Esther had a clinic appointment in Denver and she's doing well. She is feeling good with no real side effects so far. The biggest inconvenience is managing her IV lines, but I think she's handling it well.

She is having fun pushing her IV bag around in her stroller even with marker on her nose.

IV lines are quite the inconvenience when you're playing hide and seek.

Things are coming together with the house. The room is cleaned out and all the mold is gone. The plumbing is repaired. The leak was caused by a freeze from this last winter. The room is drying out now and should be ready to begin repairs next week while Esther is in the hospital. God is kind in his timing of this detail.

 

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Well, our bed didn't catch on fire

Last year when our friends were walking this cancer road with their son, their bed caught fire from a rogue tip of a match. On Friday afternoon I was thinking of this story, aside from the casualty of a special quilt, is humorous now. Our bed didn't catch fire, but our house has some major water damage.

On Thursday I left the spigot in the front yard on a bit. There is a sprayer attached to the end of the hose, so a little pressure was built up in the hose. This little bit of pressure caused a lot a bit of water damage in our school room. After calling a mitigation company to take a look at the sagging ceiling and bubbling walls, we learned this has been a slow leak, and there is a decent amount of mold in the area from the leak. You remember that whole mold and stem cell transplant thing? This is not good!

The mitigation company has been very helpful and compassionate regarding Esther's health. They sealed the area off, started a dehumidifier and two HEPA filters to keep the air clean. Esther is not allowed to go downstairs. The BMT staff considered putting her on something prophylactically, but felt like since she's so close to 6 months post transplant and her numbers look good now she'll be okay as long as she stays away from the area. Our insurance company didn't initially seem able to cover the damage, but after a claims adjuster came today, we were surprised to see they will cover some of the damage and repair costs. Possibly most of it depending of the cause of the slow leak. If it was from a freeze, they may cover more.

These last few days as I have considered these circumstances I have been peaceful. There was an initial freak out, of course, but I was humbled to know...deep in my soul know...if God can carry us through the last year, this is nothing.

We're beginning Esther's 4th round of antibody therapy. Today we spent most of the day in the clinic doing labs and beginning a 96 hour infusion of Il-2, a very strong drug to kick start her immune system. It causes the same immune response a healthy person would have when fighting a serious illness. This tells Esther's body there is something wrong and it's time to battle. Next Monday, the 10th of June, we will head back to the PICU where she will be given a higher dose of this antibody and the companion drug that binds to any neuroblastoma cells, causing them to be marked and stand out to her immune system, training her body to fight the cancer on its own. Pretty amazing stuff.

This is the same combination Esther had in April and it was very, very hard on her. This time she's only getting half of the antibody dose and the companion drug, chimeric, will be given at a slower rate. We are praying this will stay any of the difficult side effects she endured last time.

So much all at once. My grandpa was also admitted to the hospital on Sunday. I have not been able to see him as much as I'd like over the last year and am feeling burdened by this.

Tonight as I was praying about our home, Esther's treatment, my grandpa's health I wandered to the patio and was just wrapped in beauty. A glass of wine in hand, a warm breeze holding my body, and an orange to red to pink to purple sunset in my view, I just found myself at rest. Peaceful. Deep in my soul knowing that tonight, that my life, all of it, is all a gift from the magnificent Creator who loves me.

 

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