Captain America and His Princesses

Captain America, Defender and Protector

Princess Jasmine. Her favorite is Cinderella, but there weren't any Cinderella's in her size. Good thing she's flexible!

Princess Rapunzel, Let Down Your Hair!

Princess Snow White, with ruby lips and skin so fair.

Princess Belle, She is definitely beauty in the midst of a beast.

 

When Esther's hair is long enough, I'll curl it this way for sure!

We went to my brother and sister-in-law's house for trick-or-treating. They have a great neighborhood. This year there were 15 trick or treaters in our group. Esther rode in her stroller for about a block and then came home. Such a fun time!

When I was a little girl, each time I encountered a wishing well, I had the same wish. I wished to be a princess. I remember the smell of the chemicals as I threw my coins into the bubbling waters. Shortly after I began a relationship with Christ I read this verse in Hebrews 2:11

"For he who sanctifies and those who are sanctified all have one source. That is why he is not ashamed to call them brothers."

I thought a lot about how Jesus is the Son of God, the KING. My trust in Christ to remove those crimson stains of sin has made Jesus not ashamed to call ME his sibling and his Daddy is the King. This same King is my Heavenly Father, and I am a princess indeed. Still today I love the reminder that I belong to the King, I am his, a princess, the desire of my heart was fulfilled and my wish was granted!

 

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Home again, back tomorrow

Everyone is home tonight. Esther has a follow up appointment with her surgeon tomorrow and then it's all candy. Just kidding, although she does have some weight to gain. I think I'll let her wear her Belle costume to the hospital.

One More Day to Set the Record?

A quick update for tonight. We should be going home tomorrow. They let Esther start eating soft foods and we had a good day. She enjoyed some oatmeal, applesauce, and a cheese stick throughout the day and she was feeling no stomach pain by the end of the day. She perked up a bit this afternoon after a nice bath as well and I could tell she was feeling better and more encouraged. The hope is that we should be able to go home in the morning.

I was thankful for God's grace today. I woke up feeling a temptation to be frustrated and anxious and to yield to cabin fever but God settled me and lavished good on us today. Esther is excited to get home and to try on her Belle costume and wig and see her siblings. I miss my wife! Today was day 8 in the hospital and tomorrow will make it her longest stay so far.

It looks like the next round of chemo will be delayed a week, maybe starting on Nov 8. This gives Esther a chance to fully recover and her platelets were still only around 50 this morning with her red blood counts only in the 8.0 range. It'll be nice for her to have some time at home. If MIBG were still happening, we would have been having to fly on Wednesday and she likely would not have been well enough to start it, making it even more chaotic. The only thing about Round 6 being delayed a week? If she goes neutropenic around day 10, there's a good chance she'll be in the hospital the week of Thanksgiving. Which, maybe that's not so bad. There's something about being in the hospital that brings clarity and gratitude.

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A Lamenting Sunday with Mickey, Sid, and Peyton

Today was another low key day with Esther still dealing with stomach pain. The good news is that after another X-ray, it looks like it's just due to her bowels still waking up and some gas stuck in there as her system gets going again. So today she spent a lot of time with Mickey Mouse at his clubhouse, Curious George, and Sid the Science Kid. We also got to watch most of the shellacking the Broncos put on the Saints.

Esther had to get her butterfly (access to her port) replaced but she did the best I've seen her at getting deaccessed and she gutted out getting poked again. It was a stressful end of the day for her sweet little heart and she crashed quickly to sleep not long after finally turning out the lights.

Esther has been waking up at 6am to go potty and then going back to sleep until 8:30 or 9am. It's been a huge blessing to me having that chunk of time in-between to get up and going and spend some time with Jesus. I used to just try to sleep when Esther sleeps but I'm learning that the extra sleep isn't as refreshing as that time with God. This morning I set my playlist to random (or not so random!) and the first song that came up was "Please Be My Strength," the song that I shared yesterday! The second song was "Not Home Yet" by good old Stevin Curtis Chapman. God reeled my heart in very quickly!

Another stirring song for me recently is again one from Gungor that's been good for my soul and very pertinent to the season that we're in...

All this pain

I wonder if I’ll ever find my way

I wonder if my life could really change at all

All this earth

Could all that is lost ever be found

Could a garden come up from this ground at all

You make beautiful things

You make beautiful things out of the dust

You make beautiful things

You make beautiful things out of us

All around

Hope is springing up from this old ground

Out of chaos life is being found in You

What I love about this song as well as "Please Be My Strength" is that they so eloquently illustrate the difference between complaining and lamenting. Complaining is what we're so tempted to do and what we yield to most of the time. It's hard, we want to simply vent our frustrations and find blame and relief and justice for our pain and hurt, even if it's a little thing. But complaining is a way of coping that doesn't express how we are truly hurting.

Lamenting is a channeling of that hurt and pain towards God. Lamenting is expressing our grief and need. Lamenting is a pouring out of our hearts to God. Lamenting is fully expressing the pain and anger and grief to your Heavenly Father who can comfort, bring peace, and heal. Complaining covers over and embitters. Lamenting brings healing and draws you near to Jesus. Lamenting lets God in.

Lamenting is a cry for God; complaining is a cry against God. (Tullian Tchividjian, Glorious Ruin p179)

Both of the songs express a lot of pain, doubt, worry, and discouragement but at same time direct all of it honestly in faith towards the God who is there. A good heart lesson for me moving forward.

If you want to hear more about the origin of the song (the wife in the band wrote it), you can listen to her tell the story after about the first minute here.

This time in the hospital has been the longest for Esther since the beginning. Tomorrow will be day 8 and still likely not to be the one where we go home.

And he who was seated on the throne said, "Behold, I am making all things new." (Revelation 21:5a)

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Counts Up, No Fevers, What's the Deal?

This morning Esther's ANC was up to over 3000. She likes to skyrocket! She just went from 46 to 600 to 3000 in 2 days. The usual. Her platelets were down to 38 today but her red blood count was holding. Again, she also had no fevers.

So we're home right? Nope. She had a bout with borderline diarrhea this morning and her stomach was bothering her all day so they kept her on clears, put her on isolation just in case, and we stayed the course for the day. She didn't have any stool the rest of the day for them to test so we'll stay on isolation for now. We laid low today and she didn't feel up for much besides movies and Disney cartoons.

Our guess for her stomach issues? Her antibiotics have been different this time around. She's never had this regimen of antibiotics and never gotten stomach problems while inpatient before. This time she started having stomach issues 24 hrs after being checked in and it's just not going away even though she's no longer neutropenic or having fevers.

So we'll see how she's feeling tomorrow and if I can discuss the antibiotics situation with the doctors. The not so fun part about tomorrow that you can pray for Esther in is that she'll need to have her port reaccessed and butterfly needle changed out. She has to have this done even though she doesn't get to go home yet because you have to change it every 7 days. Being deaccessed from her port is one of her least favorite experiences!

Today felt like a long day with less sleep last night (my own fault staying up late to do laundry, then Esther waking up early) but I am slowly appreciating the pace of inpatient time. I'm an introvert so that helps. I enjoy good downtime. However, hospital time has a way of drawing out that restlessness inside of you that you can just distract at home. So much of our life is consumed with trying to be productive, trying to justify our existence and "get things done." It takes a huge amount of effort to genuinely slow our lives down for even just 15 minutes of silence. We complain about busyness and the daily grind but the truth is that we want it. We don't want to slow down and hear the clarity of our own thoughts and hurts and desires and God's voice. It's much easier to push ahead.

I am thankful for the slowness of today. Yesterday was more fun and playing with Esther. Today was just waiting and just being. That's ok. It's good to feel like things are out of your hands. It's good to recognize the world doesn't ride on my shoulders. It's good to feel small and disconnected from the pace of the world. Today was good for my soul. In the past I think I would have been more quick to be frustrated and to feel exiled and isolated. Today, I still battled that restlessness but Jesus' peace was very real to me.

Music has been a growing blessing to me during this season. The song below by Gungor has especially stirred my soul to Jesus this week. I love the honesty of it and the trust despite not understanding. The video especially pricks my soul. I hope it stirs you like it has for me.

Pray for Esther to be feeling better tomorrow and to not be in any pain! Also, pray for the little boy next door to us. He cries out multiple times a day and I just ache for him and his parents. I can tell by listening to him that it's not merely a fit or tantrum but genuine anguish and pain. Pray for them to feel a genuine moving of God's presence and for an opportunity for me to bless and encourage them somehow.

Blessed be the God and Father of our Lord Jesus Christ! According to his great mercy, he has caused us to be born again to a living hope through the resurrection of Jesus Christ from the dead, to an inheritance that is imperishable, undefiled, and unfading, kept in heaven for you, (1 Peter 1:3-4)

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Owl Pellets, Playdoh, and Puppet Shows

We've heard SO, SO, SO many comments about our family.  FIVE?! kids?!  Wait, two twins, like two sets?  Your house is busy.

I often comment that I'm very thankful and it's a lot of fun.  And that's the truth!  Of course life with five children is exhausting, but I'm pretty sure life with one baby was exhausting.   It was so fun to write about all of the kids yesterday, so I "probably" want to do it again today.

Fridays are Classical Conversations and today was such a fun day!  One great thing about CC is doing cool science experiments I would probably never do at home.  Today was particularly interesting.  While Zinnia was at home making delicious cupcakes and playing with our friend, Mrs. Kathy, the older three kids and I were dissecting owl pellets.

All of the kids really enjoyed digging through their pellets.  They found skulls, vertebrae, leg bones, jaw bones, rib bones, & shoulder and many other bones.  Aside from the stinky smell of the autoclaved pellets, I heard lots of kids saying things like, "Cool!" " LOOK, LOOK, LOOK a bone!" "What's this one?"  As the little animal scientists discovered bones in their owl pellets, they got to lay them out on a diagram and match the bones.  I was so impressed with their abilities to recognize the bones they pulled out right away.  All of the students in our group were markedly more confident wit this week's science discovery.  Last week the kids got to inspect, and I got to dissect, a cray fish.  How cool is that?!  I kinda like science...

Esther's day included some clear liquids and she did great.  She hasn't had any pain today.  Her ANC was well over 600!  That is great news because the thing that will help her body heal the most are white blood cells.  They are coming along, folks!  She is getting hungry and wanted to eat more, so she and Anthony made a playdoh feast, complete with plates, napkins and silverware.  Tomorrow she'll get to try some soft foods.  If everything goes well tomorrow, she may get to come home Sunday evening.

**UPDATE 8am Saturday. Esther has had some more stomach pain and diarrhea in the night. Please pray she would feel better. Her ANC was almost 3500 today, so that will hopefully help.**

A Playdoh feast!

Tonight after dinner the big kids put on a puppet show for Zinnia and me. They really got creative.

Tickets, $100.

A dollhouse turned ticket box.

Thankfully Zinnia and I were on the list for this exclusive show.

Snacks and additional entertainment!

The fabulous puppeteers!

There were several skits in this puppet show.  From this clip you'd think Frannie was twin A, but she's not, Lydia's got her beat by 8 minutes.  Enjoy!

Shaving Cream Fun

"I probably think my brother and sisters should come visit me.  Yeah, it probably will make my tummy feel better." 

Big grin 

 Wide eyed, blink, blink, blink

Flirting turn of the head

Repeat

I probably think I'd say yes with all of that coaxing and probably think it would make her tummy better too.  So, I probably said yes.

 Anthony is at the hospital tonight and for the rest of the weekend.  Since he was coming down, the kids came for a visit.  Right when they got to Esther's room, the art therapist, Miss Pat, walked into Esther room armed with shaving cream.  We love Miss Pat, she is so fun and a benefit of being on the 7th floor.  She doesn't come to the 8th, so there's one W for 7th floor.  Esther wanted to lay back and rest, but the other kiddos dove right in, hospital gowns & all.  So fun!

Rourke's masterpiece ended up being a space shuttle, Saturn, Neptune and several satellites.   He loves outer space and astronauts.  Some very dear friends are moving next week to Huntsville, Alabama for a job with NASA. I think we'll have to visit them for space camp!

 Lydia and Frannie drew pumpkins, flowers, butterflies, and used their abstract art skills to makes storms and lots of texture.  Frannie was a shaving cream rubbing mad woman.  As fast at Miss Pat could mound it on her table space, she would rub it all away.

Oh, this girl...look at that face!  Zinnia is spunkny and fiesty and zesty and all those other words for  a three year old.  God give us grace to make up for the teaching and training that is lacking during this time!  She only wanted to rub...she didn't draw anything.  

Esther's tummy wasn't hurting as much today!  The no eating or drinking thing is helping to quiet her bowels and ease the pain.  Tomorrow they will try some clear liquids and see if she has any pain.  If not, they can try soft foods Saturday and solid foods Sunday.  It all depends on how her body tolerates it.  

She needed both a platelet and blood transfusion again today.  Oh, how I wish I could donate...if you can, donate!  Platelets are especially needed because they only last 5 days following a donation and it's impossible to really build up a stock.  You can donate at a hospital near you or you can call Children's 720-777-1234 and ask for the blood donor center.  

And if your kids are bored, give them a pile of shaving cream on a plate or you can put it right on a table, plastic works best.  These kids could've rubbed for HOURS.  Shaving cream is cheap, it'll clean your rings, and will make your house smell all freshly showered.  

Certainty in an Uncertain Tomorrow

I imagined a night like this. Even in the hot days of June when Esther was diagnosed, I knew at some point I'd be sitting by a cold window watching the ground beneath fade behind a blanket of cool white. It felt so far away, yet the day is here. The snow is beautiful from seven floors up. God was kind to give us a room that does not have the 7th floor frosted glass and I can sit here and just admire.

Esther's belly pain has been increasing and had a CT scan today to get a better look. They have been concerned with a particular problem when a patient is neutropenic and their own healthy gut bacteria escapes the intestines and tries to grow between the intestines and intestinal lining. The CT scan could neither rule our or confirm this diagnosis. It is very dangerous so the best option is to treat Esther as if she has this particular inflammation.

I am thankful for early detection, that makes a huge difference. It creates an unexpected and indeterminate bump in treatment. As soon as the radiologist called the doctors moved into quick action. They don't really know what causes this inflammation and the best treatment is heavy duty antibiotics and to make the gut rest. The oncologist on the floor this week has been great. She sat me down, explained the seriousness of the inflammation, that this is an infection that her own body will have to ultimately fight, and she won't get better until her counts come back up.

This means Esther will not eat or drink anything until her counts return. She'll be getting IV nutrition and calories until her counts recover. At that point she can begin to try to eat but if there is any gut pain she'll have to stop.

Two of our nurses came by tonight to say hi. I've wondered if the staff here is just trained to tell every patient how cute and precious they are. As Esther was sleeping tonight with her little hands tucked under her cheek I decided she is exceptionally adorable and they all really do like her.

My sister, Robin, wrote this morning, "Casey reminded me this morning that our prayers to the Great Physican are what will bring healing and that modern medicine is the supplementary. Too often we switch them around and count on the modern medicine as the primary source of healing, and the prayer as the supplementary. God is the Healer, and medicine is the aid. And your prayers for healing go beyond the physical body of sweet Esther, God hears them and applies them to this families individual spirits. So thank you, for praying."

This is so true. God is the one who will heal Esther, who will heal any of us. She also sent me a comment someone left on Emily's blog about Thomas, "I'll pray for Thomas and his family--that the Lord's sovereign and kind mercy will be with them all these terrible days. He does not need persuading; He is good and is not a liar."

The sovereignty of God brings so much comfort. He is kind and merciful and not a liar. God is who He says He is! All of His ways are good, even those which brings pain and confusion. God is love, comfort, healer, counselor, Prince of Peace, Savoir, friend, Father, strength, understanding, creator. He has brought this journey to our lives and knows the days ahead. I can rest next to the unfrosted window and know that while tomorrow brings uncertainty, He is certain forever.

 

 

 

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Thanks for your prayers

Thank you all for praying for us, we have needed it. My spirits were lifted today and I felt held up by your petitions to a God who hears. Thank you.

Overall, Esther is doing okay. She's been spiking a fever each day and one of the requirements to go home is to be fever free for 24 hours. Each round she's been admitted for a fever but never had any infection to go with it. The doctors have said some kids just get fevers because their immune system is so compromised and their counts are so low.

When admitted for a fever when she's neutropenic (ANC below 500), she is automatically put on antibiotics as a preventative measure. When she has no immune system, any infection can become dangerous very quickly, so it's better to be safe. When she was admitted to the PICU after reacting to an antibiotic, they watched her closely with the same antibiotic last time. With that last time she had a similar, less severe reaction, so this time they decided to give her a different antibiotic.

She has been having some stomach pain and diarrhea and the antibiotic may be contributing toward the pain. Also, because she's been not eating or drinking much the last 12ish days, her body is lacking nutrients and electrolytes. Some of that she's making up with IV fluids that have some extra fats and electrolytes in it, but the rest she's trying to make up in supplements, namely magnesium. If you've ever taken magnesium, it's not fun and is only adding to the stomach pain. I asked the nurse to stop the magnesium unless it is very low in the morning. It felt good to be assertive.

Yesterday Esther had both a blood and platelet transfusion. Her blood developed a heat sensitive antibody, so she needed a blood warmer to infuse the red cells into her body. It was a long infusion, over three hours. This morning her platelets counts were low and she got a blood nose similar to the one that scared us half to death. I was quicker to know how to stop it and to be clear that trying affrin or ice first isn't the answer, she needed those platelets right away. The nurses today were great and it might be one of the first times I've seen the hospital be fast!

Tomorrow morning Esther will have a CT scan of her belly to look for any infection that has not shown up on her x-rays. At this point, it would only be something like when her own healthy bacteria has escaped into other parts of the body.

Now it's time for bed, it has been a long day and my head is bobbing. Goodnight!

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The Mounting Toll

In our school program, Classical Conversations, our kids memorize a history timeline from Creation to present day. It encorporates world history with Biblical history, and it's brought so much light to my understanding of the Bible, especially the Old Testament. This is my very favorite part of home school and has been a gift to my own understanding of history.

As a learning aid, CC has come up with a song and videos with handmotions to help memorize the points along the timeline. My kids love to watch it, so we've been watching it a lot. Emotion overwhelms me and tears come every time we get to "Jesus the Messiah."

The picture on the timeline card is of Simeon, a man who had waited his entire life to see the Messiah. It wasn't just a hope that maybe he'd see this promised King, but a sure knowing that he would see the face of the Lord before he died.

Luke 2:25-32

25 Now there was a man in Jerusalem, whose name was Simeon, and this man was righteous and devout,waiting for the consolation of Israel, and the Holy Spirit was upon him.

26 And it had been revealed to him by the Holy Spirit that he would not see death before he had seen the Lord's Christ.

27 And he came in the Spirit into the temple, and when the parents brought in the child Jesus, to do for him according to the custom of the Law,

28 he took him up in his arms and blessed God and said,

29 "Lord, now you are letting your servant depart in peace, according to your word;

30 for my eyes have seen your salvation

31 that you have prepared in the presence of all peoples,

32 a light for revelation to the Gentiles, and for glory to your people Israel."

Simeon and his people lived a history of God's mighty hand of blessing, provision, justice, discipline. They lived a history of loss and struggle, a history of waiting. I wonder if the Israelites longed for their promised Messiah to come, even when all was well. Never before have I hoped for my Lord's coming like I have the last few weeks.

I love coming to this point in the timeline, "Jesus the Messiah." For the few moments the song pauses to relish that Jesus came and the tears come, my emotion is not sorrow or fear or pain but hope in the midst of it all. Gratitude for the love Jesus has shown for me and for the love showered over us as we've walked such a weary road. I love what Simeon says, "now you are letting your servant depart in peace." My soul breaths those words every time we sing that peg of the timeline.

Like I said yesterday, this week has been hard. Really, really hard. This round of chemo wasn't so hard for Esther last time, but the compounding effect of poisoning the body is evident. She has been so sad. On Tuesday she crawled up in my lap and said in her sweet little voice, "Mommy, I want to be home but I just don't feel happy."

A three year old should not be able to express such emotion, let alone feel it. As she sat in my lap I begged the Lord to heal her or to take her home. She has had a gloss over her eyes this week and has been sleeping a lot. Her nausea has intensely lingered, which we expect with the type of chemo she received, but it's hard nonetheless.

Lydia, sweet, tender Lydia has been keenly aware of Esther's melancholy. She has asked several times if Esther is okay and has come to me in tears, afraid her little sister is going to die.

Please pray for us. Pray for Esther to perk up and smile and for her to be able to eat. Pray for our other kids to rest in our love and turn to the Lord for their sister's life. We can only comfort them so much, the depth comes from God.

The mounting toll of Esther's treatment is weighing heavily on all of us. In a time when I just want to relish in every moment our family has together, I find myself fighting to engage. News of other little children fighting their own battle with cancer, my dad's diagnosis, my grandpa's two year fight with bladder cancer, little babies born with dads who have thrown out the gift of fatherhood, other illnesses, injustice, murdered little girls, kids who are sick or died from the therapy that was hoped to cure their disease. Sometimes the ugliness of this life is enough to bring any of us to the depths of despair. It is indeed the valley of death and dying.

I have been singing The Jon Foreman song to myself again. The House of God, Forever. A reminder that though we walk through the valley of death and dying, He is with us. I don't have to fear.

Psalm 23

1 The LORD is my shepherd; I shall not want.

2 He makes me lie down in green pastures. He leads me beside still waters.

3 He restores my soul. He leads me in paths of righteousness for his name's sake.

4 Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff, they comfort me.

5 You prepare a table before me in the presence of my enemies; you anoint my head with oil; my cup overflows.

6 Surely goodness and mercy shall follow me all the days of my life, and I shall dwell in the house of the LORD forever.

Tonight we were admitted to Children's again because Esther has a fever. Her ANC was 4700 on Thursday, but is only 10 today. She will probably get both a platelet and red blood cell transfusion in the morning. We will be here for at least two days, probably more. I am thankful for the opportunity to write tonight. I needed the reminder of Psalm 23...

God is MY shepherd.

He restores my soul with each review of the timeline.

He is with me, even in the halls of this hospital.

He generously provides all things in the midst of this enemy.

Goodness and mercy will follow in all the days (no matter the circumstances, what I do, or how I feel)

I will dwell in of the house of my Lord forever.

 

 

 

 

 

 

 




 

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Needy Tonight

Our internet is not working, so of course I wrote a post that is stuck on the iPad.

Anyway, we are battling discouragement. Esther has had a hard week and it is difficult to see her struggling. She is just tired and sad, I think we all are. I know we have so many prayers, but we could use some more.

Pray for encouragement and unity. Pray for kind speech and a slowness to assume intentions. Pray for Esther to perk up and feel better. Pray that Anthony and I would be kind and gentle to each other. Pray for comfort and peace. Pray for our kids to take their burden to the cross and that we would all lay them at the feet of mercy.

"As for me, I am poor and needy, but the Lord takes thought for me. You are my help and my deliverer; do not delay, O my God!"
Psalm 40:17

Detour

Detours are annoying. A couple months ago President Obama was in Fort Collins. I discovered this not because there was any warning, but by the jarring wait of being stuck in traffic. The officers directing traffic then sent me right down another closed road. It was frustrating and I spent the morning stuck in traffic.

The part that bugged me the most is that there wasn't any warning. I would've taken a different route had I known what was coming. In the end, we got where we were going.

Our attending physician is away at a conference so another doctor, Dr. Greffe, is responsible for Esther's care. We really like Dr. Greffe, especially because he was Thomas' doctor. Anyway, Dr. Greffe called this morning to tell us that the MIBG therapy study has been suspended indefinitely and that Esther will not have MIBG therapy in a few weeks.

They have been getting some preliminary results on the first 11 children, two of them had particular severe reactions and one of those died. I feel awful for those families, please lift them up in prayer. I could only imagine the responsibility I would feel if Esther died during this portion of her treatment, it is the elective portion, the additional risk would be of our doing. Oh, pray for these families.

Over the last few weeks I have felt increasingly uncomfortable with leaving to go to Ohio. It has not felt right and I've been struggling with feeling peaceful. This phone call brought one big sigh of relief.

One of Anthony's aunt, Candy, was planning to come out during the first week were going to be gone, but she too had a feeling something was not right and hadn't booked airline tickets. Both my mom and sister also shared they had not been feeling peaceful about it either. Just this weekend I was thinking through what would happen if we backed out of the study.

We will make it to the end of this detour. Instead of taking more time, it will actually eliminate at least a month, possibly two, from Esther's treatment course. Our original route is no longer valid, we need to recalculate the GPS.

Esther will have a 6th round of chemo. It will probably be the first week of November. She will then have about 4 weeks to recover and she'll go straight into her high dose chemo and stem cell transplant, radiation, and then antibody therapy. This is the standard treatment protocol for stage 4, high risk, neuroblastoma.

A new thing to trust, that Esther will be healed without this therapy and will not relapse. That the radiologist will still be able to pinpoint any leftover cancer cells without the stain of MIBG. I have found myself frequently saying that we can do what we can to medically treat cancer, but God is the one who heals.

We have some details to work out like canceling our flights and cars. Please pray these would be able to be refunded for everyone. Dr. Greffe said he'll do whatever is needed, but as you probably know, airlines are not forgiving.

My dad had his PET scan today. There was some activity in a lypmph node under his right arm and in his throat. This could be cancer cells or something different. Our obvious request is that these areas would come back clean. From what they understand now, he'll have both chemo and radiation. Thank you for praying for him and for us.

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No Secret Handshake Needed

I find deep rooted hope in the promise that God uses all things for the good of those who love him. He uses even cancer for our good. A friend of mine shared that her journey with breast cancer totally sucks but that she sees how it has been used for good, that it woke her up out of a downward spiral revealing ways she had been destroying her life. Her humility is beautiful and so is she. The darkest, most painful parts of our lives often have the most opportunity for freedom and light. It's in the dull days of normalcy we often miss the hand of God.

My dad recently brought a little humor to the reality of cancer...sometimes humor, even a little dark, cancer humor, helps us cope. He said that Esther was going to have to teach him the secret handshake. About a month ago my dad had a sinus surgery to clean out his passages and remove his adenoids. One of his adenoids looked a little funny so the ENT doc sent it for pathology. The results came back about a week and a half ago that the funny adenoid was actually a malignant tumor called nasopharyngeal. It is more common in place like China, but it seems like it is becoming more common here. Some of the risk factors are lots of exposure to saw dust, working the belly of a ship (my dad was in the Navy), being an auto mechanic and exposure to paint fumes from painting cars.

Last Thursday he met with an oncologist to learn more about the tumor and possible treatment plans. Tomorrow (Tuesday) he will have a PET scan to determine if the cancer has spread. Please pray the scan would reveal no metastases. This week will be a big week for him with imaging, a meeting with his doctors on Wednesday and Thursday he'll have a feeding tube placed into his stomach because radiation is standard protocol and radiation to the face makes eating and drinking difficult. This will be a difficult journey for him and my mom.

Would you please remember them along with Esther? My dad is Larry and my mom is Tracie. Pray for my dad to be healed and that they would see good, hope, and peace in the midst of such a trial.

While my dad joked that Esther needed to teach him a secret handshake, I think there is some truth to it. If only we could all brave illness, loss, pain and tragedy with such grace. Kids don't live in despair. While there are moments of breakdown, little children live in trust and hope. They don't really know much different.

The same hope and trust is available to all of us. There is no secret handshake for entrance into the goodness of God's love. It is offered, freely, readily, to each and every person...now matter who you are, what you've done or not done. God's mercies are new every morning and He bids us to come. Come now, little one. I love you, I want fellowship with you, I will make all things new. Jesus alone brings the peace, the hope for each of our daily needs.

If you aren't sure where you stand with Jesus, read this. If you have a secure relationship with Christ, read it. You will be renewed and encouraged in the love of God, your Father. I hope it helps you understand more about this God who loves you, intensely. If you read this and are stirred to admit your need for a Savior...we all have need, you simply tell Jesus that you need Him. That you have sinned and desire His forgiveness and for Him to the be the Lord of your life. I remember another parent sharing about their little boy once asking God to "be the boss of me." I like this simple understanding, filled with truth. God is a good boss to follow. He will no, not, never leave us, never forsake us. There is no other person who could ever make such a promise and no other person who could ever give us the hope, peace, and courage to carry us through the trials of this life.

 

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Sleeping In Their Own Beds

Anthony, Esther, and Rourke made it home and everyone is tired. Rourke enjoyed his weekend in the mountains cutting wood and sledding with his cousin Connor.

Esther had a day similar to yesterday and even made it home without getting sick in the car. Good driving, Daddy!

Lydia, Francesca, Zinnia, and I enjoyed our weekend, complete with tea, scones, dancing, finger and toe nail painting and lots of cleaning today to get things ready for the upcoming week of low counts. It was so nice to be home. We went to church church this morning, there were baptisms this morning. I could watch baptisms all day. Such a sweet proclamation of trust in Christ. 'Tis so sweet...

Tomorrow will be a trip to Denver for Esther's neulasta shot. This is the shot that helps her blood counts recover.

Prayers for health and no fevers would be great!

Sleepiness and Rocketship Underpants

Today was an uneventful day where Esther slept quite a bit again and was pretty zoned out in the fogginess of her anti-nausea meds and tiredness from the chemo. I'm thankful that she hasn't been too nauseous since the first day (she threw up just once today) but it's hard to see her not herself and in that fog. Sam's mom came by today to hang out with Esther and let me get out for a few hours. I was grateful for a nice lunch and then I decided to surprise Esther with a few fun gifts - new Belle and Rapunzel dolls and some new play dough. When I showed her the new dress up dolls it was the only time I saw that big smile all day! I paid maybe $15 for her gifts but seeing her smile today was worth 10 times that easily and just blessed my soul.

When I got out for a bit today, I had a chance to continue reading "Glorious Ruin" by Tullian Tchividjian. It's only been available for purchase for less than 2 weeks but because I've been so blessed by his writing (including Jesus + Nothing = Everything) I preordered the book awhile back and had been waiting for it ever since. But the subtitle alone will tell you why I was quick to get it: "how suffering sets you free." I'm a third of the way through it and it's already been well worth the cost of the book. I didn't expect so much of it to keep digging into the gospel. One of Tchividjian's main purposes in it is to free us from how we typically respond to suffering and trials: either minimizing the pain or viewing it simply as a self-improvement opportunity to press through. The gospel frees us to accept the pain honestly and to get beyond a mindset of simply "gutting it out" as we accept the truth:

For the life of the believer, one thing is beautifully and abundantly true: God's chief concern in your suffering is to be with you and be Himself for you.

There's been times where I've definitely been tempted to minimize what we're going through or to try to suck it up and push forward as if I can fend off future suffering. But both fail. Minimizing doesn't allow you to actually deal with the pain. Viewing it simply as a growth opportunity doesn't work when you feel beyond yourself and just exposed in all your weakness. Then it quickly turns into a lesson in how much of a failure you are and how few answers you have. I've certainly been there many times in the past few months. I've also been tempted to minimize to avoid some tears. The gospel frees me to embrace it as it is without despair and embrace my God as He is for me. The gospel frees me to accept that I am not in control and don't have to be. I can be reminded with hope that this world is not our home.

Chapter 3 of Glorious Ruin begins with a recounting of a particularly relevant Calvin & Hobbes comic that left me laughing at its truth and how freeing Calvin's response is.

"Some days even my lucky rocketship underpants don't help." Isn't that what we need to understand and rest in much more often? I am not the God of this world and I don't have to be. My lucky rocketship underpants haven't been helping these past few months and that's ok.

The gospel frees us to speak honestly about the reality of pain, confident that nothing rides on our ability to cope with or fend off suffering. (Glorious Ruin, p68)

Esther and I should be heading home tomorrow night but I've been very thankful for this time with her. I'll be happy to be home but it's been a special time here that God has truly met me in. It's insane, reflecting on the past few days, how little loneliness I've felt, honestly. God is able and willing to meet us wherever we are. I'm not sure if I've ever felt that more in my entire life than sitting here at Children's Hospital while Esther has been receiving chemotherapy for a very dangerous cancer.

 

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Rest Easy

Round 5 of Esther's chemotherapy began yesterday. As hard as these rounds of chemotherapy have been, this is just about the end of her "induction" phase as the treatment will ramp up with MIBG and then the "consolidation" phase (high dose chemotherapy and full stem cell transplant).

Yesterday, Esther struggled with some nausea towards the evening and threw up her lunch. Some of her meds got delayed and we were stuck in the clinic almost the entire day. Today, she at a nice big breakfast and then was sleepy from the meds most of the rest of the day. It's been a very low key day.

When I look at the picture below (right before her chemo started) and think about her when she was drifting off to sleep tonight, I can see the affects of the chemo and her meds. She barely cracked a smile today as her system was just getting hammered by the second day of some very powerful chemotherapy.

Then I was chatting with our nurse later in the day about all the chemo rounds so far. When I said we should be going home on Monday, she commented that it's nice to have such short rounds of chemo. What? Short? I almost laughed. I have not thought of these rounds as short! But it barely took me a minute to think of one of our newer friends, still here, nearly 6 weeks after finishing a 10 day round of chemo to try to fight AML Leukemia. With Leukemia, there's no meds to help boost your ANC like Neulasta or Neopogen because cancer is in the blood itself. It's made me think about how long Esther would be in the hospital post chemo if not for her Neulasta shot (always the day after chemo ends) or the Neupogen that super boosted her for her stem cell extraction. Esther has spend a lot of time in the hospital but God has been gracious to us that it hasn't been more.

As we drove to the hospital yesterday morning, I was particularly hit by a newer song by Andrew Peterson called "Rest Easy." You can listen to it here. I love how this song goes past circumstances and surface level anxieties and right to the heart of the matter. I won't quote the entire song here but just note the chorus:

You don’t have to work so hard

You can rest easy

You don’t have to prove yourself

You’re already mine

You don’t have to hide your heart

I already love you

I hold it in mine

So you can rest easy

In the midst of a hectic week getting ready for another round of chemo and the stress of trying to prepare for the MIBG treatment and our travels, this song has just spoke to my soul this week. In the midst of the craziness and trial, the biggest detail that matters is settled. God is for me. God is my Heavenly Father who loves me and demonstrated that by sending his son to the cross to get me back from being cut off from him. I have nothing to prove. I don't have to hide. I don't have to pretend. I don't have to choose numbness in the pain. I don't have to choose this world or sin for my satisfaction. I can rest easy.

Come to me, all who labor and are heavy laden, and I will give you rest. Take my yoke upon you, and learn from me, for I am gentle and lowly in heart, and you will find rest for your souls. For my yoke is easy, and my burden is light. (Matthew 11:28-30)

This verse used to be a joke to me. What could that possibly mean - His yoke is easy and his burden is light. That just sounded ridiculous. It's a burden and yoke! But I think I'm slowly understanding what Jesus means. Jesus means for me to surrender to him, to his will, to his agenda. Surrender is the key. Will I stop trying to do this on my own or will I rest easy in him and by surrendering.

I spent today in the hospital with Esther as she received a very intense chemo and we worked to try to stave off her nausea. We're surrounded by other patients going through the same, some very sick. The number of oncology patients here this week is very high. On top of that, they were short 2 nurses today. And yet, it felt like a very light day. I enjoyed being with Esther even as she struggled with her attitude. I was very encouraged. Where did that come from? Certainly not from my flesh. The lightness of my day in this environment came only from the gift of his peace and that surrender.

I watched a storm roll in this afternoon. It took my breath away. I literally saw the rain moving and the ground changing from dry to wet as it moved across the land with the lightning and thunder very close as well. And yet I watched it all from the peace of our room 8 floors up. Such power but so beautiful and such a reminder as to who my ultimate peace comes from and will continue to come from.

The next 2 days will likely be more difficult but I will strive, by God's grace, to keep surrending and to resy easy in him. I'm sure my flesh is going to put up a fight though! Thank you for praying for us today. Your faithful prayers are not in vain and I was very thankful to Jesus for the lightness of his burden today.

 

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The Cows Are Rejoicing

The petting zoo was a great place for kids to hang out
while one parent ordered food & got a table.
There were bunnies, goats, a calf, a lamb, and some chicks.  

Wow.  Seriously.  You guys showed up in a big way today.  What a blessing, what a gift.  I got reports of people eating all three meals at Chick-Fil-A today!  People drove from Denver to eat dinner and join in the crowd!

Two of my cousins came for lunch and said it was really busy.  One friend posted about the Chick-Fil-A day on facebook saying, "Let's blow this thing up."  Dinner was fireworks!
The kids and I got there about 4:30.  I was hoping to avoid a big crowd and the restaurant was pretty slow.  There were two friendly and kind women greeting people as they came in the door to remind people to say they were there for Esther.  As stranger after stranger entered the doors saying Esther was the reason they were there, I was humbled.  Coupled with the faces of people we've known and loved for years, I was sort of speechless.

I stood on a chair in the back corner 

of the room to take this picture.  

 The line wrapped like a horseshoe around the room.  

It seemed to move quickly & everyone 

was great sports.  

I hope you met someone new! 

The room quickly filled and a line began to form.  At one point I was taking Lydia & Francesca to the bathroom and people I have never met stopped me to say that they have been praying and they are happy to be there tonight.  It felt funny to say, "Nice to meet you," when in many ways we are not strangers, you have invested in our lives, know our hearts, love our family.

While we may not get to know you on this side of eternity, in heaven there is unending time to know about your life, your heart, your family.  You are prayed for to a God who hears, who knows all about you, who loves you and will no, not, never leave you or forsake you.  His promises are as true for our lives as they are for anyone else's.

The kids were so proud to be expert chick holders,
knowing just how to hold them gently.
Rourke was like a fly buzzing around,
he wouldn't sit still for a second.
Zinnia is terrified of animals
and clung to my neck the entire time.  

We have never met many of you reading this blog, yet you came to support our family.  What a display of unity.  For everyone who came to stand in line together, wait for tables together, enjoy the petting zoo and face painting with such a cheerful attitude is such a blessing and a display of community!  No one came today who didn't want to be there, nothing was out of duty or obligation.  Thank you.

I hope you were blessed tonight and excited to be part of such a gift in our lives.  Would you please take a minute to thank the Lord for all the people who worked hard to serve all of us with kindness and for the generosity of the company?  Those people still made sure we know it is "my pleasure" to serve us and they had to be tired at the end of the day.

Also, thank you to the face painters from Best Face Painter and the petting zoo crew.  If anyone knows who put together that petting zoo, would you let me know?  I'll leave their contact information here.

**UPDATE**  This petting zoo crew, Colorado Carriage, is incredible.  They came with only a few hours to notice because something else happened with the one that was lined up.  They came for free and donated all the tips to our family.  They also do carriage rides in Old Town Fort Collins & in Estes Park.  Thank you, Colorado Carriage.  What a generous gift to our family!

Chick-Fil-A set up a tent at the entrance
and the face painters had their cart &tables packed with cute little canvases.
They do really great work!  

These are my sister's adorable butterfly, batgirl, and wide receiver.  

Esther and Anthony had a busy day at the hospital.  It took most of the day to get her into a hospital room and they spent the day in the infusion center.  Esther's chemo went ok, she did get sick, but once they were able to get some anti-nausea meds going through her IV, she did better throughout the evening.  She ate 3 popsicles for dinner.  She deserves it.  They made it to the 8th floor about 5:30, and I bet they have a pretty killer view of the changing leaves.  Tomorrow her entertainment will include these giggles...

Off To Chemo They Go

This is Esther's last round of regular chemo! She will still have chemo with her MIBG Therapy and then with her high dose, but this feels like an accomplishment.

This cycle is the same as she had toward the end of August. It is 4 inpatient days of chemo and will probably include a 5th day for hydration. It comes with a delayed nausea that is pretty intense. Please pray for her to handle it well and for her to have nurses who are really on top of her meds. Last time she had a great nurse for three days and it made a huge difference.

Zinnia didn't want to leave her breakfast as Anthony & Esther left this morning.
 She just asked where she was at in the picture and with tears has decided next time she'll join us.  

Anthony is going with Esther for the first few days. I'm excited to get some extra time with the kids, and I'm sure he will enjoy his time with Esther.

Today's the day at the Fort Collins Chick-Fil-A!  I think we'll go for an early dinner to avoid a big crowd, but what a day to "Eat Mor Chikin".  It is ALL DAY, just tell them you're there for Esther and the restaurant will donate 20% of the cost of your order to our family.  Thank you!

Eat Mor Chikin

I got turned down to donate platelets because my red blood cell level isn't high enough. The Children's Hospital's supply is low and I want to help, so I've been eating a lot of red meat and spinach. I have almost always been low on iron, so this is normal for me.

It's been okay, but I really do prefer chicken. This Thursday, I'll be eatin' some chicken and enjoying the delicious crushed ice at Chick-Fil-A. Our friends from the twins club organized a Spirit Night at the Fort Collins Chick-Fil-A. For every person who says they are there to support Esther Alvarado, the restaraunt will donate 20% of their order to our family. This is going on all day, Thursday, October 11th.

From 5-8pm there will be a petting zoo, face painting, and more fun family activities. They are looking for some people to help hand out flyers, if you have a little time, you can sign up here.

So, save the cooking for another night, buy your work group a tray of nuggets or brownies, or let your kids play during lunch. You have to say you are there for Esther for the restaurant to donate the 20% and you can eat in the store or go through the drive through.

 

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Well Done

Good and Faithful have been the people in our lives this last week. We are reveling in the work done on our home. Guys, the floors are beautiful and cozy and clean! I wish I knew an exact number, but I think over 50 people, including kids, worked while we were at the hospital last week to move our furniture, tear out the carpet and kitchen linoleum, install the floors, fix the trim, move the furniture back into our house, dust the furniture, walls, floors and they cleaned every surface they could find.

The floors are a beautiful blessing, but what is more beautiful is the service shown to our family. I am sure God is well pleased with your faithfulness and generosity.

We are prayerful these floors will help keep Esther healthy following her upcoming chemo treatment, MIBG therapy, and know they will help after her stem cell transplant in December/January.

I don't know who paid for the floors and I think that is good. I think of Matthew 6:14:

“Be careful not to practice your righteousness in front of others to be seen by them.

² “So when you give to the needy, do not announce it with trumpets, as the hypocrites do in the synagogues and on the streets, to be honored by others. Truly I tell you, they have received their reward in full. ³ But when you give to the needy, do not let your left hand know what your right hand is doing, ⁴ so that your giving may be in secret. Then your Father, who sees what is done in secret, will reward you.

God has a reward for the generosity shown toward our family, thank you.

I wanted to let you know about our friend who lined up the logistics and coordinated the effort to make it all happen. He used his business to bless us and was very generous with his time. He lined up the materials and a fantastic, kind, generous, fast installer. Our friend organized all of the help to make it happen. It was so smooth. I know I just wrote a verse about keeping your generosity secret. I am positive Travis only had Esther's health in mind when taking on this project, and his motivation is to honor and obey the Lord. I am sure God is pleased!

I also want to just recognize a skilled man with a good business. Travis' company is Green Built Home Design. He can do anything from a small remodel to new construction. He does interiors, exteriors, basements, additions, etc. He works with Naturecraft Custom Homes and you can see more of what Travis could do for your next home project at www.coloradonaturalelementhomes.com.  He'll do a great job.

Well done, good and faithful servants!

A Celebratory Exit

Half of the Children's Hospital atrium/lobby area was festive with snowmen and Christmas music. In any other circumstance I would annoyed by Christmas decorations anytime before Thanksgiving, but today was different. Each year the Association of Volunteers organizes a holiday card contest where kids being treated in the Center for Cancer and Blood Disorders create festive artwork to be used as Christmas cards. The cards are then sold as a fundraiser for the Center.

This year Esther will be the Holiday Card Project's cover girl. When we walked into the lobby, we were greeted by several volunteers so eager to meet Esther. They quickly ushered us over to a cake with her cute face on it. The rest of the cakes had the winning pieces of artwork. All of the volunteers were so kind and thrilled to participate in such a project. It was very sweet to feel so loved by strangers.

Esther got to go onstage and was interviewed by Murphy Huston, a morning DJ on KOSI 101 here in Denver. She was quiet at first but perked up when he asked her about her sister and princesses. She was very cute. Esther will help secure Christmas card purchases with her cute face on the brochures that are sent all over the country. I mean, really, who could turn down artwork from kids who have, or are currently fighting for their lives all spearheaded by this cute face?!

The money raised goes toward purchasing equipment, supplies, and toys and activities for the kids that are not otherwise funded. A big portion of this money goes to the Child Life department. Child Life is an amazingly helpful resource that helps kids understand, in age appropriate ways, what is happening. They often use books, games, activities, and toys to help kids understand what is happening on a broad scale and also what will happen in various procedures, tests, surgeries and more. We've had great experiences with the Child Life Specialists. In the beginning few days of Esther's diagnosis, she was given a doctor kit and a little doll with a mediport (just like hers). These helped Esther role play and become comfortable with stetiscopes and blood pressure cuffs. A couple weeks later she was able to play with paper dolls with removable hair. This helped Esther see that her hair would go away, but when we put the hair back on the paper dolls' heads, her hair will grow back. Child Life is a great department and resource. I'm glad to have Esther participate in a campaign that supports kids in ways that make the experience a bit easier and a lot more fun.

Following Esther's interview, each winner was presented with a plaque from a business sponsoring each card. It was neat to hear why the kids drew the pictures, and what lead each sponsoring business to choose that child's artwork. One of the children drew a picture of Santa riding a snow plow. The business that sponsored this card is an asphault company...they couldn't have commissioned a better card! Following the ceremony, the cakes were enjoyed by the crowds. We got to take the entire picture portion of Esther's cake at the end of the ceremony. They were smart to create cakes that had a nice wide border to cut! I'll update you with information on how you can buy the cards if you're interested. Our local CBS station, Channel 4, wrote an article on thier website about the program and winners. You can read it here (Thanks, Jen, for finding the article).

Did you notice the title...EXIT! Esther was discharged just before the awards ceremony. Each time we leave the hospital, it feels good to come home, but this time we had the decorations and cake to go with it. One of the volunteers even helped me out with Esther's giant suitcase...hopefully his back is okay!

We aren't totally home yet, but are stayig at my parents house for another day or so until our home is put back together. The floors look amazing! Tomorrow is the big job of moving the furniture back into the house and cleaning up all the dust. The crew is starting at 8am at our house. We'd love to see you there! You can email us: victoriousishername@gmail.com if you'd like to help.

We have a few days and then this Thursday Esther will start her 5th round of chemo. This is the last of her regular chemo treatments, but it is hard and an inpatient infusion for four to five days depending on how sick she gets. We are so thankful for God's kindess to allow Esther's surgery to go so quickly and are excited to be home together again.

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