Good News!

I used to get up early in the morning to enjoy the sunrise.  The last few months I have not been able to peel myself out of bed in time.  With all of Esther's appointments, I was thankful to have had more than the early morning lobby to see before 7am.  The sunrises are beautiful this time of year.  Maybe I can get into the habit again, but today Anthony and the kids did a great job of letting this light sleeper rest until past 9:30.

This the MIBG injection.
It's in a lead capsule
that connects to a saline flush.
The radiologist said there is such a tiny
amount in the syringe that every bit needs
to come out.  So she uses a two way valve
a pulling saline into the MIBG syringe.
She then shuts the valve and
pushes the saline in the MIBG syringe into
the line.  Repeat.  It is interesting to watch.

Okay, Okay.  With a title that says "good news," you're all...get on with it now!  Esther's transplant doctor, Dr. Giller, called today to review the tests results he's received.  First, the MIBG scan.  MIBG is a radioactive isotope that binds specifically to neuroblastoma cells.  Esther's scan reveal NO UPTAKE!  ANYWHERE!  

Bone marrow...completely CLEAN!

The CT scan showed nothing in her skull, face, or sinuses.  There is a calcified lymph node in her abdomen that may have had cancer cells in it at one point, but they are not living because it didn't light up in the MIBG scan.

All cardiac tests came back normal!

Her chest x-ray look good as far as tumor activity is concerned, but her right diaphragm is raised.  We will take another x-ray on Monday to determine if it was just the image or if there is potential nerve damage from the placement of her Broviac.  They struggled to place the line in an preferred area in her neck.  There is a possibility a nerve in the neck that controls the diaphragm could have been nicked in the process.  I'm not sure what the long term consequences of this would mean.  We would love prayer for a clear, clean x-ray on Monday.

Esther has had a fairly significant hearing loss.  One of the chemo drugs she had in two of the rounds is known for impacting hearing, specifically in the higher tones.  The chemo kills the tiny hairs in the ear that vibrate at higher tones.  While most hair will grow back, these ones won't.  For about half of the tones, Esther needs about double the volume to hear those sounds.  The audiologist said the loss has probably been a bit gradual and she probably does fine in one on one, quiet conversation, but that she will struggle in group situations or classroom settings.  The audiologist also said she could really benefit from hearing aids because the loss will impact her speech, but since she will be receiving another chemo along with her transplant that could damage hearing, we should wait until after her transplant to evaluate again.  

So, with all of this great news, why are we continuing with treatment?  Neuroblastoma is a very, very aggressive cancer.  The transplant doctor was telling us that not too long ago, survival rate was less than 15% and virtually all stage 4, high risk patients relapsed. 

It is important to continue to meet this aggressive cancer with equal aggression and completely decimate any cells that could be hiding anywhere in her body, just like Jehu.  

Next week Esther will have a kidney function test and a few other evaluations and meetings.  Please pray for her kidneys to be healthy.  This regimen is hard on the kidneys.  

On Wednesday Anthony and the kids came to visit and we all had a great time at Brent's Place! The kids played on the playground.  This is a big deal, we haven't let Esther play on a playground since she was diagnosed.  She was so happy!  Afterward they decorated cupcakes, and made some ornaments to hang on the Brent's Place Christmas tree.  Afterward, they played with some other children at the house and we all loved checking out the Christmas lights that a crew hung that day.  To end the day, we brought a nice, fresh cooked meal to up to our apartment.  It was even portioned out into to go containers for all seven of us!  A couple times a week "personal chefs" come in and make a meal for every person staying at Brent's.  It was a delightful day and the kids are very excited to visit again. 

Zinnia loves our little car, she was at home in this one!

Esther loves riding bikes!  This little tricycle was perfect size!

He's a pretty good captain!

Swings!

Slide

This is a DREAM playhouse.
A real door, with a real handle, a living room, a kitchen, cabinets and cupboards,
 a REAL sink and even hardwood floors.  

There are even REAL, working windows.  

 To God be the glory, we are thankful.  The road ahead is still long and scary (more about that later), but God is faithful no matter what.

Let Us Take Care Of You

God has provided wide measures of grace the last two days. I've felt like there are wider margins than there should be, and Esther has done so well.

Yesterday was a busy day of learning, talking, planning. The Bone Marrow Transplant team at Children's Colorado is very well respected among their peers and around the country. There are so many reasons why. We have felt so very thought of and prepared for. Every person on the team knows Esther's case and her days. Her primary doctor is the head of the BMT program, but he knows her schedule and has spent well over 4 hours just communicating with us. They have ushered us into this very sobering portion of Esther's treatment with assurance and comfort. In the midst of all of this cancer treatment, it can be easy to forget how sophisticated and specialized is Esther's therapy.

After our long day of learning about and practicing care of Esther's new central line, we arrived at Brent's Place and were greeted well. One of the members of the staff was busy filling a wagon with food and the director showed us to our apartment. We were delighted to see a sweet greeting. Esther asked, "Is that for me?!" Monday night is a great night to check in because it's family dinner night. Various chefs and regular home cooks volunteer to prepare a meal and all of the families are invited to come together to enjoy a meal together. The two women who cooked last night's meal made 4 or 5 different dishes, a delicious salad, bread, brownies and we even enjoyed a glass of wine. Last night was an extra special treat because it was one of the patients who live in the building's birthday. Brent's Place provided an A-MAZ-ING birthday cake and even had some gifts for the birthday boy who turned 11 today. It was nice to talk with some of the other families. I am realizing how much a gift it is that Esther will be getting her own stem cells rather than stem cells or marrow from another person. It will lessen the blow of her journey significantly.

The placement of the Broviac went pretty well. A broviac is basically an IV that doesn't come out. It comes out of the right side of her chest and has two different IV lines under her skin that flow into two different veins. One of the veins they like to use is in her neck, but for some reason that didn't work so well, so they had to use a vein under her collar bone. In the end it is placed well and was drawing just fine in the OR, but she did end up with extra incisions because of the difficulty of finding a vein that worked well. She also had a smooth bone marrow biopsy and hasn't been too sore this afternoon.

Esther was scheduled to have surgery at 9:30am this morning, but they called us yesterday afternoon to tell us her surgery was rescheduled to 7:30am. That meant we arrived at the hospital at 5:30am. It was nice to drive about 5 minutes, especially that early in the morning! Esther was pretty excited about her warm blanket. We texted pictures to my sister who was taking care of the kids. They thought our outfits were pretty smashing.

Getting to the hospital earlier than planned is quite the difference, especially since Esther has quite the appetite these days. She gained almost an entire kilogram in less than a week! That is over two pounds! She was pretty funny before going back to the OR. The nurse asked her what color popsicle flavor she wanted when she woke up. She said, "No, I want dinner." They all got a kick out of that...she didn't want breakfast or lunch, just dinner. That's good for her. As much weight as she can gain over the next couple weeks the better. The rest of the afternoon she was asking for that dinner. Unfortunately anesthesia makes her pretty nauseas, so as fast as she could inhale any bit of food, it came back up. She did manage to keep down her dinner...green beans and macaroni and cheese. About half a box of mac & cheese. Before that she kept down her snack...a cheese stick, a cup of applesauce and repeat.

Tomorrow will be some evaluation of her hearing and heart functioning. She will also have her MIBG injection for her MIBG scan on Thursday. Anthony went home this afternoon but will come back tomorrow with the kids. They are so excited to visit Brent's Place. It's another good night to visit because it's craft night!

When I was checking in with Allen from Brent's Place he walked through the financial portion of staying here. Because of generous contributors to the foundation that supports Brent's Place, our stay is free. As I was talking with Allen about this and how amazing it is to be able to offer this facility to families at no charge he told me that right now is the time to "let us take care of you." He then proceeded to tell me about how each family gets one outing per month and that even though Esther will be in the hospital, he'll organize a birthday party to celebrate both her and Zinnia's birthday and will send a small cake to the hospital for Esther and have a big one here for Zinnia.

I was reminded of these promises in Revelation 21:5-6

5And he who was seated on the throne said, "Behold, I am making all things new." Also he said, "Write this down, for these words are trustworthy and true."

6 And he said to me, "It is done! I am the Alpha and the Omega, the beginning and the end. To the thirsty I will give from the spring of the water of life without payment.

God is making all things new. ALL things. Our big and little things, our hurts, our sin, our pain, our struggles. God can not lie and reminds us...these words are trustworthy and true. Write down, believe it! It is done, our assurance, our forgiveness, our eternity in Heaven, our cost to stay at Brent's Place. It is done and the water of life is given without payment.

We have done NOTHING to earn this gift of staying at Brent's Place, of having our daughter treated at one of the best transplant facilities in the country, with some of the most respected care givers. We could never give back enough to "make up" for the ways we have been blessed on this journey. We could maybe even it out monetarily but the effect on our hearts, the love we've been shown here and along the way from our family, friends, and strangers, the depths of it all could never be repaid.

As it is with Christ. We can not earn His favor, His forgiveness. It is a GIFT, it is waters leaving our every recurring thirst satisfied. Water none of us could ever buy. While this journey is so, so, so wearisome, God is faithful to give take care of us. He's faithful to take care of you. We have to stop trying to earn it or feel like we've done something to deserve it and just let God take care of us.

 

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Busy Week Ahead

We have had a nice long weekend at home.

Anthony finished up at work on Wednesday and will be able to be off for the next month or so. His co-workers have been abundantly supportive of our family. They have made meals, chopped firewood, built chicken runs, and donated their own days off to support our family. Several of the people in Anthony's office worked to create a company wide policy to donate PTO to another employee. The policy was approved and allows each employee to donate up to 8 hours of PTO to another employee. We have been so blessed and most of time Anthony will be away from work will be paid. Thank you, Ayres Associates. If you ever need some good civil engineering done by a pretty outstanding group of men and women, definitely give these guys a call!


Thanksgiving was a pretty laid back day! A sweet girl from our church nominated our family for a meal her 4H chapter puts together each year. Our meal was all prepared and donated by this group of families. We cooked the turkey at home, and everything was delicious!

After our meal we set up and decorated our Christmas tree. This was fun but also stung a little. It felt funny putting up a tree knowing that Esther will be in the hospital, and we won't have that culmination of the season sitting near the tree. The kids were so excited hanging their ornaments, old and new. Each year we take the children to choose a new ornament. Their delight in pulling out their past selections bring me abundant joy. I still need to take pictures, but our tree is adorned with a jet, blasting off into outer space, an intricately sparkly ball with swirls that remind Lydia of a cursive "L", a ballerina with bangs just like Frannie, a camera reflective of Zinnia's love to take pictures, and sparkly pink bow compliments of Miss Esther.

It was kind of a "normal" weekend. Anthony got a haircut, I took a nap, the kids jumped on the trampoline, we went to church, watched football...we just lived life. Today a sweet friend took some pictures of our family, photos are such a gift! If only our minds could so accurately remember the details that move our hearts. I am thankful for photography.

This week will be incredibly busy. Tomorrow Esther, Anthony and I will spend the day at Children's. Esther has 6 scheduled appointments. In the afternoon we plan to "move in" to Brent's Place. The three of us will stay in Denver while the rest of the crew stays home. We're staying over because Tuesday starts with the sunrise!

We'll check into to the surgery center by 7:15am for Esther's Broviac placement. She currently has a central IV line that can be accessed and deaccessed. This is nice because when she doesn't need to have an IV, it doesn't have to be accessed. However, it has limits. The needle must be changed every seven days, and there is only one IV tube to use. During her stem cell rescue (aka: transplant) there is a lot of infection risk to changing the needle and the tape used to secure the butterfly (the wings used to stabilize and remove the needle) is really hard on her skin. A Broviac is a different central line that does not come out, has less risk for infection, and gives more options for care because it has two tubes. The drawbacks are that it doesn't come out and there is daily care needed to maintain the line. Esther's mediport, when she's not hooked up, has no care needed. I am sad she has to endure another surgery, but I think not having to deal with all the extra care a Broviac requires the last six months is nice for everyone. She will also have a bone marrow biopsy while she's already under general anesthesia.

Wednesday she'll have a hearing test, heart function tests, a radioactive MIBG injection to prepare for Thursday, and a meeting with the dietician.

Thursday is another big (and early) day as she'll have an MIBG and CT scan to determine what of her cancer is left and to get a good look at all of her organs before these final, high doses of chemo and transplant. The MIBG is the same isotope used in the therapy she was going to have but a MUCH lower concentration. This isotope is specifically used to diagnose and see neuroblastoma as the cancer takes up the dye and then "lights up" on the scan.

The plan is for Esther to stay at Brent's Place each night this week. The mornings are so early and we don't know how she'll be feeling after her surgery. Her hips were so sore from her last bone marrow biopsy and riding in the car would be painful. The three of us will be in Denver Monday and Tuesday, but Wednesday and Thursday we'll switch so one of us can be here with the kids.

We are about to be blasted with information. Pray our weary minds retain what's needed and remember the resources to find out the rest. So many needs for prayer this week...

• For a safe surgery and clean marrow
• For no lingering pain from her bone marrow biopsy
• For preservation of her hearing and heart. Of the six rounds of chemo she's endured, two of them include a drug that causes hearing loss and a different two include a drug that can cause heart damage. Please pray that her hearing and heart would have been preserved and these tests reveal only health.
• For positive results from her scans, that there would be no more visible neuroblastoma cells. From what I understand, even if there are no cells we can see, there can still be microscopic cells hiding in her body. Since neuroblastoma is so aggressive and prone to relapse, it must be treated with equal aggression. This is why she still has to have a stem cell transplant, radiation, and 6 months of antibody therapy.
• For Rourke, Lydia, Francesca and Zinnia to endure well and rest in the love of their mommy and daddy. I miss them terribly. I miss being their caretaker, teasing out the depths of their hearts as I get to mother them throughout my days. Pray for God to prepare them for the even greater lack of routine that will come with the next couple months, but that in the chaos, they would be secure first in God's love and care for them and second, they would rest in ours.

On a somewhat different note, would you please be praying for me? I am utterly exhausted. The general fatigue of all of this combined with my iron related anemia has been quite difficult the last week. Also, I have developed some lower back pain. The last three days have been fairly intense. I don't remember doing anything that caused the pain, I just woke up with it one morning. I'd like to wake up with out the pain.

 

Also, please be praying for my dad. He has made it through two rounds of chemo and four weeks of radiation. The effects are mounting and it is getting difficult to endure. He has mostly lost his voice and can not eat. He only has two more weeks of radiation and then one more round of chemo. He is in the home stretch, but it is difficult. Please be praying God would meet him, comfort him, and heal him.

 

Thank you for your continued support, prayer, and love of our family. I think we would be in complete despair with out it.

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Burrito Bliss

We made it home tonight after a little adventure leaving the hospital. Esther's ANC went from 57 to 517 this morning, that's the ticket out! Her platelets were low and since she's prone to bloody noses, we went ahead and gave her a platelet infusion.

Her mouth sores are getting better. So much so that she ate two pieces of chocolate cake for dinner and more cake...I mean a chocolate muffin....for breakfast.

As we were leaving the hospital I met the dad and sister of another kiddo on the oncology floor. Anthony has a friend who told us to look out for a family he knew whose son has Leukemia. We chatted for a little while and then headed down toward the car. Before we got out of the hospital, I noticed a hive on Esther's forehead, so we turned around, went back up to the oncology floor and spent an extra hour and a half in the procedure room.

It is common to have reactions to the preservative they use for platelets, but Esther hasn't had one until today. Because we were discharged and you can't be seen in an outpatient setting the day of discharge they couldn't administer any meds unless we went to the ER. The alternative to the ER was for me to run down to Walgreens, buy some Benadryl, and then give it to her myself, so I did. They monitored her for an hour or so to make sure she didn't have any breathing problems, and off we went. I'm thankful we ran into that family because we talked for enough time I would've been in the car and may not have seen the hive. That was kind of God. In the future Esther will have to have Benadryl before any infusion to prevent another reaction.

We stopped to visit a friend spending a few weeks on bed rest at University Hospital (right next to Children's) before her baby is born. It turns out both she and Esther had a craving for Taco Bell. After we picked up Taco Bell I headed back to University Hospital and turned one street too soon. This glorious wrong turn ended in the Hallelujah Chorus! Right behind University Hospital on the ground floor of one of the medical school buildings is a BIG. CITY. BURRITO!

Friends, I am in burrito bliss. Chipotle and Big Dirty are right next to the hospital. These are my two favorite places to eat, I think I'll be enjoying some spicy Lupe on a potato burrito in the near future. I'm sure it won't be as delicious as the original Ft. Collins location, inspiring the nickname, "Big Dirty." Anyone whose enjoyed the deliciousness of a potato burrito after walking through that alley, standing in line outside because the waiting area is so small, and then accidentally leaning against the 800 bottles of hot sauce just before you order knows that there's something about the atmosphere that makes the burritos from the original location just better. Either way, I think I was as equally excited to come home as I was to discover Big City Burrito right by the hospital, maybe more, or not.... I think that exercise room at Brent's Place is going to come in handy!

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Another day

One more day in the books. I am struggling to keep my eyes open. Sorry for the typos over the last two days.

Esther's doing ok. She took a big nap this afternoon. She's had several long nights, so she needed it. We increased her pain medication today because Tylenol wasn't helping. That seemed to help.

Her numbers are going up, so hopefully tomorrow will be our discharge date. She needs to demonstrate some more solid eating and drinking before she comes home. This has been hard because it hurts a lot to swallow anything when her white cells come back, the sores should go away.

Thanks for your prayers. Goodnight.

Mouth Sores

Just a quick prayer request for tonight.  It was a pretty laid back day for the Alvarados in Fort Collins and the Alvarados in Denver.  Anthony and I switched this afternoon.

Pray for his week.  He's planning to take a leave of absence from work the week after thanksgiving.  He's got a lot to finish before the craziness of tests take over.

Esther is sleeping away right now, but has some mouth sores.  Pray they would go away.  The attending physician o the floor this week said she'd probably let Esther come home Wednesday, we hope so too!

I Think I Will Have Those Chicken Wings After All

At about 7:30 this evening, I walked downstairs to the cafeteria to get my dinner after putting Esther to bed. It was a pretty uneventful day. In fact, I actually had texted Sam about writing the post tonight since I knew her and the kids had a fun day working hard around the house and outside.

When I walked up to the cafeteria grill to order my chicken wings, I was somewhat rudely told that I could not order the wings until 9:30 since it was a weekend night. After sulking for a few minutes, I settled for the healthy choice of a bacon cheeseburger and fries and headed back up to Esther's room. I don't normally get french fries but these were fresh and hot and I was excited to eat my dinner and watch more Parenthood on Netflix on our iPad.

But it was not to be. As soon as I walked in, another nurse had just taken Esther to go potty and now Esther was sitting up in her bed and the nosebleed had started. Here we go. Her platelets were only 27 this morning and that was from labs taken at 2am - almost a day earlier. Her own nurse Jess came in and we began battling the nosebleed and pushing for a platelets transfusion. I knew where this was all going so my goal was trying to keep Esther was swallowing her blood and to keep her leaning forward. The resident doctor had a genius idea to put Esther on her stomach and that helped a ton. Jess probably held pressure on her nose for nearly an hour while I rubbed Esther's back and we waited for platelets. We kept the pressure on her nose through the platelets as well.

The whole process lasted nearly 2 hours. She only coughed up a little bit of blood and didn't seem to lose too much. Esther blows my mind at how resilient she is. I just tried to coach her through breathing and keep her calm but she does so well at communicating what she needs and calming back down when getting flustered. The nurses were kind of blown away. I honestly can't imagine God equipping her any better to endure nights like she just had.

Needless to say, my cheeseburger and fries were a bit soggy and cold by the time things settled down. I checked the clock and decided that I was going to have those chicken wings after all! I came up and ate my yummy dinner and then called Sam back. In the midst of talking to Sam in the hallway, another nosebleed started and I rushed back in. This one wasn't nearly as bad and we held pressure for about 20 minutes and it stopped. Esther nearly fell asleep before we finished stopping the second nosebleed she was so exhausted! Post nosebleed, her red blood count was back to 6.4 and before the night is over, she'll have her second blood transfusion in as many days. Her ANC was only 16.4 this morning so even with no fevers or other illnesses, it'll still probably be a few days before she gets discharged to go home.

How easily we could have been at home this weekend! Once we knew her platelets were low on Thursday and she had that slight nosebleed Thursday evening, I had hoped and prayed she would have to go in before Saturday. God had it in his hands and was very gracious in his timing. If we were at home, it could have been very dangerous circumstances. I am very grateful for God's tender hand in all of it.

God also knew I really wanted those chicken wings.

In a hard trial, it can feel almost cliche and minimizing to say that God works all things for good (Romans 8:28). But it's still true isn't it? Even in the little things. Chicken wings to nosebleeds, do I really believe God has it all in his hands? How can I not after the night we just went through?

Most of the time we act like God is distant or indifferent or even asleep. Most of the time that's just how we want it. But I am so thankful my God pursues and does not sleep nor is he forgetful. What would we do if not for that? What would we do if God sat back and had not sent his son into our harsh world to get us back? Where would we be had he not loved us first, when our backs were turned to him? My God has plans for hurting 3 year olds and he doesn't forget the chicken wings either.

I lift up my eyes to the hills. From where does my help come?

My help comes from the LORD, who made heaven and earth.

He will not let your foot be moved; he who keeps you will not slumber.

Behold, he who keeps Israel will neither slumber nor sleep. (Psalm 121:1-4)

 

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At 3am, God is the Difference

You keep him in perfect peace whose mind is stayed on you, because he trusts in you.

Trust in the LORD forever, for the LORD GOD is an everlasting rock. (Isaiah 26:3)

Over four months ago I remember we had just gotten home from our first stay in the hospital. Everyone was home and my Aunt Margarita and Uncle Wayne were with us as well. Esther had been home a day and it was Sunday. Let's have Robin (Sam's sister) and Casey and the kids over and have a nice barbecue together! Instead, we were about to experience our first trip to the ER that evening. Esther's temp started rising and we started panicking and getting anxious and packing bags. We did not expect it that quickly. We went to our local Fort Collins hospital ER but Sam and Esther ended up having to take an ambulance down to Children's in Denver after sitting in the ER for 6 hours anyway. It was stressful, tiring, and scary. The biggest thing I remember thinking was: "Is this how the next couple months are going to be? If so, this is going to be hell."

The last few months have included an ER visit after every chemo round except for the third and each stay has been at least 3-4 days long with the last one being a record 9 days long.

But it has not been hell. It has not been easy or fun but certainly not as scary and hellish as I imagined it, even in some of the worst of it. I was reflecting on this a bit last night. Sam and I were talking about our days and we were discussing how so many things that used to burdensome to us now just seem like nothing worth fretting over. Our hope is that those things would stay that way even after we eventually come out of this season. We talked about how this season with Esther has put things in perspective. However, I reflected that I felt it was more than that. I feel like the difference in the little burdens and the big burdens has not merely been perspective but that God's peace has been so much more present in our lives. His peace in us has increased. We've seen it in Esther too. She simply does not know the meaning of the word despair. It's a foreign concept to her. At times she has felt weary and sad but never despair. Her trust and courage have been convicting. That discussion was around 9pm.

Fast forward to 2:30am. Esther gets up to go potty and I can tell she's feeling cruddy. I check her temperature. 100.5. Please, no. I spend the next 15 minutes talking to Sam and praying in my head that God would enable her to make it until the morning. But we both know what's coming. At 3am, her temperature hits the magic 101. Time to go. Up to that instant I was simply fighting it. But at that moment, I just had a peace and I was strangely excited to drive down to Children's with my daughter. I got dressed while Sam got Esther going and then we started the drive down. Esther was very chatty and we listened to her favorite VBS songs about 2 times through before she fell back asleep.

It was such a peaceful and enjoyable drive. No dread. No anxiety. I had been wishing for different circumstances but I would do that drive all over again in a heartbeat. We ended up being in the ER until past 8am this morning and we were both a bit grumpy this morning after a 5am nap but I would never want that time in the car with her and Jesus and at the ER taken away.

The difference in the circumstances is God. It's so weird and hard to explain but I feel like I barely understood what faith was before this or the depth that his peace could go. This has been the hardest thing for Sam and I that we've even experienced and the next few months are likely to get more difficult and more intense, but I am so grateful for seeing more of my God. His tender and calming hand has never been more apparent. It doesn't mean this isn't hard. But his peace is greater.

Esther is neutropenic right now and has an elevated heart rate but has had no more fevers and her stool and X-ray on her abdomen showed no problems. She appeared to be getting a cold last night but today the runny nose went away and she just had a bit of a sore throat. She has complained of a little bit of stomach pain but she's been a toot machine all day so I wonder if it's gas if everything else has checked out. They're mainly focusing on pinning down what is giving her the elevated heart rate. She's also been a bit dehydrated. But she has been in good spirits and took a good nap and feel asleep in about 2 seconds tonight. Pray for her counts to come up quickly and for nothing to spread in her system while her counts are down. Pray for her heart rate to come down. But, again, we're encouraged and we had a pretty enjoyable day. His peace is greater.

What then shall we say to these things? If God is for us, who can be against us?

He who did not spare his own Son but gave him up for us all, how will he not also with him graciously give us all things? (Romans 8:31-32)

 

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Guess she likes the ER

Anthony and Esther just left for Children's.  Esther had labs drawn yesterday morning, and her counts are really low.  For some reason, Esther likes the ER.  I thought it was just Sundays, but it must be the ER because she continues to spike a fever when the clinic is closed, like tonight (or this morning) at 3am.  Every time she spikes a fever I question if she really has one.  Is it really over 101?  Is our thermometer accurate?  Is it just because she has on a hat?  Then I remember the little comments here and there....

"When they don't have any white cells, sometimes we only get a little blip of a fever to indicate a greater infection."

"I was just taking care of a kid who delayed to call with their fever, they just were admitted to a regular floor after a three week stay in the ICU."

It is so much better to be safe and hey, we prayed for her fever to come sooner rather than later so that hopefully we can be home, together, for Thanksgiving.

She was very, very cute when they left.  Her head has been cold, so she's been sleeping in hats.  Combined with her cute little voice and this ensemble, you pretty much want to squeeze her forever.

Anthony decided to go in and will stay the weekend with Esther.  He's got to have his own ER induction.  As they were leaving Esther was a jumble of thoughts, she was giving herself a pep talk about magic cream, that it won't hurt when she gets her butterfly in, that it's dark outside, that daddy's going to stay, and her new princess chapstick.  

Esther has a runny nose and sounds like she might be getting a cold.  Pray she would heal quickly and that those counts would come up fast so we can spend Thanksgiving together.

Tonight...or this morning, I am thankful for Esther's sweet voice and kids who put on a good dance party.

Moving Along, Breathing Deeply

When our kids get really upset and are having a hard time settling down, we've told them to "blow out their candle." They don't really understand what it means to take a deep breath and slowly blow it out, but they know how to blow out a birthday candle. That's been a bit of my mantra the last few days.

Last week when Esther was getting her chemo a nurse who will be helping us with Esther's stem cell transplant work up came by bearing a checklist. I like myself a good checklist, but this one caused me to pause and blow out my birthday candles.

Anthony appreciates a sermon by John Piper talking about prayer. He likens it to breathing. Honestly my prayers have been more of blowing out candles with very few words. I just can't really get much out. The Spirit knows my groaning too deep for words. Romans 8:26...

Likewise the Spirit helps us in our weakness. For we do not know what to pray for as we ought, but the Spirit himself intercedes for us with groanings too deep for words.

I am so thankful God understands the depths of my heart and has given me the Holy Spirit to help. That I can take breaths and say, "I'm scared," and He takes over. I don't need fancy words, or even any words. While anxiety is not totally running away with my heart, it is present. I'm continually giving it over, continually coming to the throne of mercy and laying it down.

Beginning the week of November 26th, Esther will complete a slew of tests and consultations. December 11th she'll be admitted for high doses of chemotherapy, and a few days later she'll receive her stem cell transplant. The actual infusion of stem cells is actually quite simple, it's just that, an infusion over a few hours through her IV. The chemo will kill her present bone marrow and she will have no immune system until her stem cells are grafted in and begin to reproduce white and red blood cells and platelets. We'll be in the hospital for about a month and then will need to stay near the hospital for about another month while she completes two weeks of radiation and because patients receiving a transplant generally need daily blood and platelet transfusions. It is a lot to drive back and forth every day for four hours of transfusions and if her platelets are so low, an accident along the way or a nose bleed could prove to be terribly dangerous. [Insert deep breath].

We've spent a lot of time considering what is the best options for our family during this time of needing to live near the hospital. We had hoped to find a good option for all seven of us to stay together, especially since this was supposed to be kicked off by MIBG therapy in another state. However, after a lot of prayer, we've decided to take advantage of a truly remarkable resource. There is a home just a couple blocks from the hospital called "Brent's Place." It is a home designed to provide a safe and clean environment for patients like Esther, and for their families.

Esther and I had an opportunity to tour the facility and meet several of the staff members yesterday (Monday). I called Anthony as we left and I couldn't even describe the facility to him because tears had taken over. If you could imagine a dream facility to delight children (and their families) enduring such a difficult road, this would be the place you would build. It has a playroom, bikes, crafts, an outside play area, movies, games, an exercise room, a move room, a kitchen and stocked pantry, cleaning supplies and paper goods, a safe garage to park, a coffee bar with lots of pastries free to take, and many kind faces to greet you. All of this is just the first floor. Then they have apartments for the families to reside. The two bedroom apartments are furnished and stocked with the basic supplies of a home. But all of it is easy to manage and keep clean.

These apartments have a four person occupancy restriction (they will allow five sometimes). During the month Esther is in the hospital if we want, either Anthony or I can stay with the other four children and we'll be right by the hospital! When Esther is discharged and needing to stay so close to the hospital, we won't all be able to stay together, but everyone can visit as needed. This facility is pretty incredible. They have regular activities, craft nights, music lessons, meals cooked by professional chefs, and visits from the Denver Broncos. They even took requests for Christmas gifts for the kids. I was stunned when the woman working with us then asked what Anthony and I might want. I didn't even know what to say!

Speaking of Christmas...I found some brochures for the Holiday Card Project. How perfect is this?! They were smart to pick such a cute girl for their marketing materials! www.holidaycardproject.com

Continuing the thankful list...

November 11th: Te Amo! Anthony's Aunt Margarita has come to help now three times. She brightens all of our spirits and helps us laugh. She is fun and loves our kids. Both she and Uncle Wayne, are quite the cooks! We were loved over the last few days with Taco Tuesday (in cognito on a Saturday), a roasted chicken, and home cooked spagetti sauce. She has been so kind to continually give so much of her time and to go home worn out! Wayne has been extra generous to share his beautiful wife with our family for so many days (although this time he was on a business trip to Italy).

November 12th: Brents Place. The facility, the family who had a dream to support other families in ways thiers was not, the staff, and the generous contributors who help make it affordable or free for every family to stay. www.brentsplace.org

November 13th: Naps and flexiblity in homeschooling. Today the kids were TIRED! This fatigue and general crankiness is consquences of the evil enemy called daylight savings. Today, we took it easy, sat by the warm fire, played a game of Blokus, and classified all of our halloween candy. We've learned about the classifications of living things this year, so we applied that to our halloween candy. Chocolate, subsets of chocolate, fruity candy, fruity and hard, fruity and chewy, salty snacks, drinks, healthy snacks, and toys? It was funny because I didn't know where to put tootsie rolls. I like to call them the hot dogs of candy. The kids decided they were chocolate because they are brown, I dedcided they would go in the ziplock for daddy's cubicle.

 

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Round 6, DONE!

We're heading home for some good family time. Pray for health and that God would give us a full three weeks fever free, at home, together.

Continuing the thankful list...

8th--Hospital Ice
9th--Medicine to fight cancer
10th--About 100 thank you notes to write.

Sown

Glittering fingers, glittering toes

Delight found in strokes of color

Tea parties, puzzles, dolls, stories and shows

Moments from a day where the heart grows.

 

A walk.

A giggle.

Heart bursting beauty.

A gift so precious, only the Lord fully knows.

 

 

A sweet child, living with grace.

The love of her Maker glows.

She is captivating.

My heart slows, peace is sown.

 

 

 

 

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A Pleasant Day

Thank you for your prayers today. I felt peaceful, held up, and encouraged. Today showed many smiles from God. This, for example, is apparently the funniest thing Esther has seen.

She was giggling and squealing and talking about "that silly horse" much of the day. It kept shaking it's mane out of its eyes like a woman with a ton of hair and then looking ahead, standing straight up, to enjoy the ride.

When we got to the infusion center we were taken care of by one of our favorite infusion center nurses, Julie. They had a room set up for us on the 7th floor, so it looked to be a short stint in the clinic. But as is everything hospital, the plan changed and we spent most of the day in our room with a view. There are a bunch of private rooms in the infusion clinic and in the back there is a big room with a wall of windows looking south. There are about six areas sectioned off by curtains. Usually it's freezing back there, but today it was warm.

Right when we sat down in our area, our Art Therapist friend, Miss Pat, was there ready with paint. Esther painted a masterful blob on one piece of paper and some flowers on the other. Right when Esther finished her paintings her favorite show (at least this week), Doc McStuffins, came on the Disney Channel. I couldn't quite catch it, but she was grinning, EAR. TO. EAR. I called her name and this is the remnant of a HUGE grin.

More smiles from God.

Our nurse got her chemo started, which is a feat. This round is fairly complicated. She three chemos at the same time, a 72 hour straight infusion for three days, a short, easy one each day, and a 6 hour infusion the first two days. The 6 hour chemo requires at least two hours of pre and post hydration to flush it all out of her system. This all gets tricky when we work in her anti nausea meds, a lot are not compatible with the chemo or each other. They are fine in her body, but will crystalize or react if they mix in her IV line, so the nurse has to really be on top of it and plan ahead because she has to flush the line before and after each medicine.

When we got to our room we were greeted by several familiar faces and excited "Hi, Esther"s. These people love her. The nurse practitioner told us when we were still in clinic that the resident begged to take care of Esther this week. It was so funny because when she walked in she was very casual. "I think I've taken care of you before." HA!

We were originally going to be on the 7th floor, but our second room assignment was on the 8th floor. A nurse we really enjoy, Rebekah, stopped by and said she had to come say hi because she bought the charge nurse on the 7th floor a cup of coffee in exchange for Esther's room assignment. She had to at least come visit, she bought a latte for it!

Esther nurse today, Stella, was so friendly but then another nurse, Julie (different Julie than infusion center Julie), started doing the dirty work...collecting urine samples. Stella poked her head and commented she won't have to do anything because everyone is so eager to help out Stella's patient. Her nurse tonight is a third Julie and she's great!

I felt so loved by the care providers here. More smiles.

When we walked in to the clinic this morning Esther said, "I want to see Dr. Garrington today." He is our attending physician and has been out of town for a few weeks. It turns out he is the doctor on the floor this week. She was so excited to see him. We talked a bit about the change in therapy. He told us he was actually with a doctor who had cared for one of the children who became sick from the MIBG study. Dr. Garrington said he didn't feel comfortable letting us participate and would've talked to us about changing course but the next day the study was stopped. He told me it is very rare for a study to have such negative effects. Pediatric oncology is very slow in progression because they are not quick to take big research risks. He said he missed caring for Esther and was disappointed to not help us more during such a big change.

We have a good, caring doctor. Another smile.

God was kind to give us a pleasant day, full of His smiles. God meets us where we are at. He is not a cruel, heartless commander, void of affection. He reveals his kindness over and over throughout our days...it's often a matter of if our hearts are ready to see.

Tonight, I am thankful for this hospital and the men and women who have WILLINGLY invested themselves in the lives of cancer patients. This is an intimate investment. These nurses see more of our daily lives than anyone else. They see how we cope, our attitudes, our habits, all of it. They really care for the children here, for Esther. With each investment in the relationship there is a loss...the child gets better and doesn't come anymore. If the child doesn't survive it's a whole different loss. Praise the Lord for these people. Pray for them to see God's smiles and love for them through Esther's life.

One of the nurses told me she primarily works in the BMT part of the oncology floor and asked if I was prepared for the intensity. I'm not sure you can be prepared for it. Tonight I prayed that God would be revealed through this suffering when Esther has her stem cell transplant. That she would be miraculously spared of the ugly side effects and the nurses and doctors here would be able to see nothing than God's power.

 

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Packing

You know that scene in the Jim Carrey version of the Grinch where he's standing outside yelling his disdain for the names in the phone book?

That is me every time I have to do this.


Tonight I was fighting tears over it. I felt like throwing a toddler sized fit. I just don't want to have to fit everything into this suitcase, I don't want to leave, I don't want to do this anymore.

Tonight I am thankful for your prayers because I need them, and I know you'll pray.

And just like that, we begin again

Tomorrow kicks off the next big step in Esther's treatment. She'll have labs drawn and a CT scan to make sure her intestinal inflammation is gone and then Wednesday we'll check in for chemo. Anthony is going to take her to Denver so I can have one more day with the rest of the gang.

It is so funny how a week at home really feels like such a long time. Actually, when Wednesday rolls around, 12 days will be the longest stretch I've been home since June. It has been a treat to be mommy. Last night I even made a deliciously fried family favorite, the Mexican meal. I think we all enjoyed a taste of normal and the smells of garlic and onion roasting in a pan certainly helped all of our spirits.

My dad started his second week of treatment today. He is having radiation Monday through Friday (and twice on Wednesday) for a total of six weeks. He also has chemo on Mondays of the first (done!), third, and fifth week. He's already knocked one week of his treatment down. Also, they had a lymphnode in his armpit biopsied and it came back clean. Praise God! It seems like his cancer is fairly contained. The effects of his treatment are surfacing. His lack of taste, nausea, and fatigue are setting in. Pray for endurance and that each and every beam of radiation and every drop of chemo does its job effectively against the cancer and that his other tissues, like salivary glands and taste buds, would be spared by God's mercy.

At church on Sunday we sung a Hymn, Trust and Obey. We sometimes sing hymns, but not always. Anyway, as I was singing those lyrics, I was spurred on that I need to just trust and obey right now and not wait for the feeling. "Trust and obey, for there's no other way, to be happy in Jesus, but to trust and obey."

Feelings don't authenticate our faith. While I have so much to be thankful for right now, I'm bone tired. I have thought about what has spurred gratitude over the last two days, I have kind of been searching for a feeling. The lyrics to that song reminded me that my gratitude is found in Jesus and the deliberate choice to trust and obey.

November 4th

I am thankful for my church. That our worship leader continually finds songs that spur my soul to worship the Lord and music that sticks with me. It's not just a concert, but something that brings me to contemplate. I am thankful for warm weather and how my kids love to shout and hollar and groan at football games. I am thankful for a husband who sees my needs and tells me to go get a massage, so I did.

November 5th

I am thankful for the ability to mother my children the last couple of weeks, to teach them math and reading and language, science and geography. Today we took a nature walk around our yard to see how many varieties of leaves and leaf parts we could identify. It was so much fun. The efforts are paying off, wouldn't you say?

 

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November 2nd and 3rd

Somehow in the midst of cancer it's difficult to choose just one thing to be thankful for each day. We have been shown such love and care! Yesterday was a busy day, I was thankful to be able to attend Classical Conversations with my older three children and for our friend, Kathy's, care for Zinnia and Esther. Kathy's grandchildren are going to be so loved and thoughtfully engaged. While we were at CC, our laundry was picked up and later that afternoon very kind woman came to clean my bathrooms. To top it off, we had a delicious, homemade meal delivered. It tasted like a snowy night, curled up in a soft blanket, fresh out of the dryer with a cup of cider. Our meal even featured balloons for each of the children, which they've played with all day today. The kids were so excited that it was a gift for them too. Thank you!

I have not written nearly as many thank you notes as I'd like. We are so thankful for all of the meals given to us over the last five months. They have nourished our bodies and our hearts. Thank you for showing us with food, we feel so loved.

Today brought a restful morning for me while Anthony took care of the children, a date with Lydia and tonight a date with Anthony. Today is also my cousin's birthday. He and his wife have been such supports to us, even from far, far away. I am thankful for their lives, Happy Birthday Darnell!

Tonight I'm also thankful for cowlicks. While I know these little hairs will again fall out, it's so nice to see this little swirl that will plague my daughter for years to come.

Next week brings a CT to make sure Esther's intestinal inflammation is gone and if all looks well, she'll being her last (again) round of regular chemo on Wednesday. It is a three day infusion but she needs lots of hydration, so last time it took 4 days.

For now, back to that date...

 

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'Tis the Season

It's November.

First VOTE!

Anthony and I just finished filling out our ballots and he'll drop them off tomorrow. We found this website helpful in learning about actual facts that aren't taken out of context or swayed, words directly from the candidates on issues, and voting records. www.votesmart.org.

Second, be THANKFUL!

I've seen lots of month of November thankful posts. I'll join in on the fun here. Today my heart has been near to the Lang family. Ashley is a dear, dear friend of mine who just started a several day journey from Fort Collins to Alabama. She is a fellow twin momma who has been a source of encouragement, support, and care over the last several years. I am thankful for her smile, her character, her loving, thoughtful heart, her generousity, her support of her husband and love for her children, her hardworking, faithfulness, and her laugh. I got to drop of a little goodie bag for her this morning and get one more hug. Ashley, we all love you and will miss you terribly! You are one incredible woman and friend.

Third, Christmas Cards

We have been notorious for not getting Christmas cards out before Christmas. Once I sent them in February or March...I made them all, they just needed to be addressed. I can see why it's good to plan ahead, so here's a way you can do it! Several people have asked about the Christmas Cards fundraiser Esther's cute face is promoting. You can learn more about the project at www.holidaycardproject.com or you can buy the cards in the gift shop at Children's hospital. They do have options for custom printing if you'd like to use them for your business.

You can see a few pictures of the ceremony on the Holiday Card Project Facebook page.

 

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