Puzzles and Platelets

These were the hot topics of the day. Anthony and I switched, so he is at Brent's Place with the kids, and I am back at the hospital. Esther is recovering and her body is showing signs of her new stem cells engrafting to make new bone marrow. Esther's ANC was 1900 this morning. White blood cells are the first cells to recovery, next are red blood cells and last are platelets.

An ANC that high is wonderful! Esther's body will still be very susceptible to infection for the next several months, but there is some ability fight. She did receive a blood infusion early this morning and platelets following the blood. Tomorrow we will start to wean her off her pain meds and encourage eating. Yesterday the attending physician this week told Anthony probably about another week. We'll see, her ANC has been above 500 for more than two days now, so that's a big criteria met! Next she needs to be infection free, fever free, eating a bit, and able to go three days between blood or platelet transfusions (so she can make it from Friday to Monday morning.

Esther is into puzzles right now. She loves completing them! We spent at least four hours putting together puzzles today. I'm impressed with her skills.

Another puzzle today has to do with staffing nurses. I'm sure it's incredibly complicated and needs change daily as patients come in with fevers or nurses need to leave for whatever reasons. This meant a nursing change for us. We really like our first nurse, but Esther was particularly excited to have her beloved Mr. Ricardo. He was our first oncology nurse during Esther's first week of chemo and is just a wonderful nurse. He has been an oncology nurse for a long time and made a huge difference that first week for both Esther and Anthony and me. He was able to ease our fears and help us understand Esther's care and what she may be feeling. When she found out he was going to take over for Miss Andrea, she said, "that's good because I love him." So, he helped her do her puzzles, obliged our crazy family FaceTime, and managed her meds timely and with precision. When he was leaving she told him and by and then told me, "it's okay, Mistow Wric-kaw-dough will be here tomorrow." We'll see if he is assigned to her care or not, either way, it made Esther's day.

I want to thank everyone for creating such an awareness about platelet donation, for donating platelets, and I also want to ease some fears. One thought...if you can't come to Denver, donate in your area! All hospitals have a need for platelets. We of course are encouraging anyone who can to come to Children's right now because we daily see the vast need, but if you can't donate here, go where you can. Check their website for details and go to a hospital before another company.

While Children's Hospital was out of platelets, they can still get them and will not withhold platelets from a patient who needs them. Different people have bleeding issues at different levels. The average number of platelets (blood clotting cells) is between 150,000 to 500,000. As you can see, that's quite a range! Most oncology kids will receive a platelet transfusion at 10,000 platelets. When Esther's nose bleeds became chronic, her doctors increased her transfusion number to 20,000 platelets. The thought behind this was to avoid some of those difficult nose bleeds and to help keep us from a trip to the emergency room just for a platelet infusion.

Now, after chemo that completely wipes out your bone marrow and causes a giant canker sore in your entire digestive system, there is an increased likelihood of the body having a hard time managing bleeding, so the parameter for patients who are having a bone marrow or stem cell transplant is 20,000 platelets. Since Esther was already at that point and prone to additional bleeding through nose bleeds, the doctors increased her parameters to 30,000. After she continued to get nose bleeds, they decided to increase her parameters to 40,000. That means she needs more frequent transfusions.

One really great thing about the doctors here is that they are proactive and not reactive. They are not just thinking about the medical aspect of a nose bleed but also the other factors that go into a bleed. That it's really scary for the kids, it can make them throw up blood they've swallowed, it's scary for the parents, when outpatient a trip to the ER is an infection risk as well as an unnecessary expense.

Enter platelet shortage. Esther is ordered to automatically receive platelets when her numbers drop below 40,000. If there is a supply, this is not a problem. When the supply is low, the hospital is wise to institute a system to make sure the supply is there for when a critical bleed occurs. It is smart of them to triage and determine the most significant needs.

So, instead of transfusion at 40,000 platelets, they will wait until either Esther's number drop below 20,000 or until she is showing signs of bleeding. This can either be in the form of a bloody nose or bloody mucous from her "mouth" sores (it's not just her mouth). When this occurs, the nurse will let the doctors know and they have to approve a transfusion about 20,000 platelets.

The hospital is able to get the blood and platelets they need. I think they use Bonfils. I would assume this is not ideal because it is processed differently and I'm sure there is a cost for the hospital to buy the blood products from a third party. I'm sure it's still safe, but it's a complication, an added step and a cost for something they should not have to pay for.

So, the bottom line is that Esther is receiving platelets when she is demonstrating signs of trouble clotting. A transfusion for her at 20,000 platelets brings more risk than an infusion at 40,000 platelets.

I posted information on the blood donor center at the top of the blog, so call and make an appointment, ask any questions and save lives.

All of this is very scary, but I am not aftraid. A four hours nose bleed is not fun and is a bit scary, but I know the care providers here are taking good care of Esther.

P.S. I apologize for typos...I was literally falling asleep typing and typing out a dream. It might've landed somewhere in this text. Good night!

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Where was God in 2012?

Quick note #1: I stole this post idea from John Piper because his recent article encouraged my soul so greatly...

Quick note #2: Esther's counts shot up to over 400 today! It's still early to tell but it looks like her counts have finally turned. We'll see if her ANC follows the skyrocket pattern she has tended to have so far...

2012 was obviously a hard year for us and will be remembered for a long time above many other years. So much of the time it felt like we were descending into darkness. In the first part of the year, we watched too many around us enter the fray of cancer only then to be thrust upon it ourselves. Where was God in the darkness? Where was he as our lives were turned upside down? Where was God as Esther fought a very deadly cancer? Where was God during those times when it felt like we were unraveling and breaking down?

Where was God in 2012?

• Where was God when Esther's bump alerted us to Stage IV Neuroblastoma? Where was he when the disease should have likely spread into her joints? Where was God when the disease became apparent before Esther felt any pain?
• Where was God when we had access to a top 10 in the nation children's facility in Denver?
• Where was God when the chemotherapy shrunk her tumors?
• Where was God when people lavished on us meals, gifts, money, and service to us and our home? Where was he when our floor was replaced with hardwood?
• Where was God when Esther didn't get any serious infections during her many days of neutropenia after her 6 rounds of chemotherapy and transplant treatment?
• Where was God when her primary tumor was so easily removed?
• Where was God when my coworkers pushed for and succeeded in getting a PTO donation policy in place and then proceeded to double my PTO for the year?
• Where was God when my worries were all but eliminated regarding our insurance coverage and financial issues?
• Where was God when Auntie Margarita spent so many days with us serving us, encouraging us, loving on us, cooking for us, and drinking many a bottle of wine with us?
• Where was God when Mrs Louise, Mrs Monica, Mrs Connie, and Mrs Marcia were doing all of our laundry for us multiple times a week?
• Where was God when Brent's Place opened an apartment for us and provided many meals and gifts and love?
• Where was God when we had the sweetest and caring nurses you could ask for?
• Where was God during each and every blood and platelet transfusion?
• Where was God when Esther's siblings worked hard in our home and Brent's Place cleaning, thinking about Esther, and putting her first even when it meant missing mommy or daddy for many days?
• Where was God when MIBG therapy was cancelled at the last minute sparing Esther from potentially a life-threatening combination of treatment?
• Where was God for the clean scans prior to transplant?
• Where was God when Auntie Robin and Uncle Casey didn't go to Manhattan 18 months ago and instead moved a rock's throw away?
• Where was God when Auntie Robin cheerfully took care of our older 4 along with their 3 cousins many many days? Where was God when Uncle Casey did so many things to help take care of our home including a number of times at the drop of a hat?
• Where was God in the constant encouragement, friendship, and tears with Auntie Robin and Uncle Casey? Where was God in their sacrifice to keep their family healthy just to bless our family?

Where was God in 2012? Here's what he tells us:

Whatever the LORD pleases, he does, in heaven and on earth, in the seas and all deeps. (Psalm 135:6)

I, I am the LORD, and besides me there is no savior. I declared and saved and proclaimed, when there was no strange god among you; and you are my witnesses," declares the LORD, "and I am God. Also henceforth I am he; there is none who can deliver from my hand; I work, and who can turn it back?" (Isaiah 43:11-13)

And we know that for those who love God all things work together for good, for those who are called according to his purpose. (Romans 8:28)

For I know the plans I have for you, declares the LORD, plans for welfare and not for evil, to give you a future and a hope. (Jeremiah 29:11)

But Zion said, "The LORD has forsaken me; my Lord has forgotten me." "Can a woman forget her nursing child, that she should have no compassion on the son of her womb? Even these may forget, yet I will not forget you. Behold, I have engraved you on the palms of my hands; your walls are continually before me. (Isaiah 49:14-16)

In 2012, God was working for his glory and our good. He was lavishing his grace on us even in the darkness. God was busy not leaving our side. God was busy not sleeping or forgetting. God was planning for good in this even years ago.

In 2012, God was pouring out his peace on us.

In 2012, He was blessing us through uncountable others.

In 2012, he was showing his grace and love deeper than we've ever seen and in ways that you can only see while you're in the darkness and fog of confusion, pain, and loss.

I pray that you will look back on 2012 with gratitude. I pray that 2013 will be the end of Esther's treatment forever. I pray that God will continue to sustain us. But I truly pray that in 2013 you and I will know this amazing God even better and more intimately.

Jesus Christ is the same yesterday and today and forever. (Hebrews 13:8)

 

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Wonder In the Attic

God was so kind to give us such vibrant senses.  A smell or notes from a song can bring emotion and memory that no amount of words could ever describe.  Attics do this for me.  

Our coat closet at home contains the door to our attic.  When that dry attic smell drifts down as the weather warms up I am instantly transported to a place of wonder.  My grandma used to take us on adventures in her attic.  She would pull the clothes back in her closet and then open the door.  It was like the wardrobe in Narnia.  Crossing the threshold where closet meets wonder was thrilling.  As we crawled over the carpet squares, she would show us her treasures and collections from years past.  Each treasure has a story and my grandma was a fantastic story teller.  Attics both make me feel close to this woman I dearly love and miss her terribly.

This week my kids got to experience the wonder of an attic, the Brent's Place attic.  The kids, even little 4 year old Zinnia, pulled wagons full of toys through the maze of the kitchen, storage room, garage and into a lift.  Once the doors on the lift were closed they got to push the button that would carry those wagons, full of toys, up to the attic.  They raced up the stairs to be at the top when the lift arrived and they unloaded their precious cargo.  They then helped unload the wagons and sort the toys to be stored for future use at Brent's Place.  They journeyed back through the maze to refill their wagons at least 5 times.

These toys, books and crafts are what is left from the generous boutique hosted on by Brent's Place just before Christmas.  This boutique was yet another incredible act of generosity by this amazing organization.  First, the parents were invited to shop for each of their children.  We were given IKEA bags and told to fill them up.  Have you ever seen an IKEA bag?  They are enormous! 

After we filled those IKEA bags, we dropped them off to a team of gift wrappers.  While the parents were shopping, the kids were making ginger bread houses, ornaments, and decorated stockings and hats.  At the end of their craft time after parents finished choosing things for their own children, the kids were invited to shop for each other.  

Making Stockings

Gingerbread Houses.  Rourke looks so serious!
Lydia was able to attend but had to wear a mask since she had thrown up the night before.  

Zinnia was thrilled to make a snowflake ornament.

For the last several weeks our kids have been gathering and wrapping up their own toys and placing them under the Christmas tree as gifts for each other.  They were THRILLED to get to choose a gift for each other.  Esther didn't miss out on the fun.  Earlier in the day I was able to attend the Snow Pile at Children's Hospital.  The snow pile is a conference room full of toys, books, puzzles, games, and other treasures.  I was given a ticket to choose some toys for Esther and then a book, puzzle, game and stuffed animal for each of the other children.  The gifts I choose that day were from Esther.  On Christmas Eve the kids exchanged their gifts for each other using FaceTime.  It was so sweet because they were genuinely more excited to see how each other liked the gift they gave than what they revived themselves.  

Opening up their gifts from Esther.

Following this shopping time at the boutique there was a wonderful dinner for all the families at Brent's Place.  It included carolers and a visit from Mr. and Mrs. Claus.  We've never taken them to see Santa, so this was a first, they had a blast!

Lydia hopped right up on Santa's lap.

Frannie was hesitant, but warmed up after watching her sisters and brother survive.  Getting a gift from Santa's bag when they were finished was a good motivator too!

Frannie asked for a gift for Esther too.

These carolers were GREAT!  Wonderful singers and funny too. 

In many ways, this was a difficult Christmas, but in other ways it was completely unforgettable.  I don't think our kids will ever have such an abundance of gifts.  They have endured so much, honestly, it was fun to just see them spoiled.  They loved being at my parent's house, they were more excited to see them and be with their cousins than to open gifts, although, they were pretty excited for open gifts Christmas morning.

What I was most blessed by, though, was the attic.  The kids never once asked for one of the toys.  They were excited to help, to run the lift, to walk through the maze.  Rourke told me after they were finished that when he grows up he wants to work at Brent's Place.   I would be pleased if he did.  I hope this adventure in the Brent's Place attic is as impactful as my adventures through the closet door with my grandma.  

Esther is doing okay, getting a little better.  She has been spiking a fever at least once a day, this has required a new antibiotic.  Today she had another platelet transfusion after several hours of nose bleeds this afternoon.

My mom and sister came down to care for the kiddos while Anthony and I got an anniversary date.   He is so sweet to me, but pretty amazing himself.  I even used a not so nice word and loud tone talking to (at) him tonight and he still forgave me and we enjoyed each other.  We'll have the romantic anniversary date next year.  Tonight was nice and I am thankful for a husband who reads to his kids, is a refuge for me, and helps care for his little daughter in the hospital.  

The Daily Grind of Day 17 (Transplant +8) and an 11th to Celebrate

The last two days have been largely the same story. Esther's ANC is still under 20. She needs platelets once a day. Her mucositis is a little better but largely still painful in her throat. But, although she has had a few fevers here and there, she has not had any other residual infections or illnesses. She has definitely been pretty fatigued between all the medicines and the harshness of the chemo on her system but she still has been relatively talkative and playful. Yesterday, I woke her up at 10:30 and today Sam tried waking her up at around 9 while I was donating platelets downstairs. I'm not sure how long she would have slept yesterday or today had we not woken her up! The doctors were encouraged by this though because it means her pain is probably at a manageable level and she's been comfortable enough to sleep that much.

The Daily Grind

Everyday amounts to mouth care 3 times a day (takes about an hour, most of it waiting before rinses), bath time, platelets time (see the picture below), some play time, 2-3 movies, trying to swallow a few meds, and lots of Mr. Thirsty (her suction tube that helps clear her mouth since it's so painful and difficult to swallow).

Why do you say, O Jacob, and speak, O Israel, "My way is hidden from the LORD, and my right is disregarded by my God"?

Have you not known? Have you not heard? The LORD is the everlasting God, the Creator of the ends of the earth. He does not faint or grow weary; his understanding is unsearchable.

He gives power to the faint, and to him who has no might he increases strength.

Even youths shall faint and be weary, and young men shall fall exhausted;

but they who wait for the LORD shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint. (Isaiah 40:27-31)

Right now, I think Esther is probably the only patient on this unit that is not in isolation (because she is infection/illness free), which is pretty crazy and a testament to God's grace on her situation. Pray that she stays that way! The doctors anticipate that her ANC should start to come up at around transplant plus 10-14 days (today is transplant +8). That is pretty near and I'm praying she starts to come up tomorrow. They're saying it's likely she gets discharged by the end of next week.

However, things can change quickly. She is in such a fragile state right now. We're very hopeful but I'm trying to not put my hopes in how she's doing. I'm trusting God to still get her out of here by the new year. Today we went through our discharge training but there are 4 conditions to discharge: 2-3 days with an ANC above 500, no infections, can go 2-3 days without a transfusion, and she's eating and drinking. There's some fudge factor with those (who enjoys hospital food coming off her treatment?) but those are critical guidelines.

Sam and the older 4 got back to Brent's Place last night and had a fun day today doing chores and even working hard for Brent's Place helping sort and organize old and new toys.

An 11th to Celebrate!

Tomorrow (the 28th) is Sam and I's 11th anniversary. This is not exactly the way we envisioned it, but do you normally have much of a vision of what your 11th looks like? Hopefully we can enjoy lunch or dinner together tomorrow.

Either way, I could ask for better friend or partner through this season, or any season for that matter. She is honestly my best friend. I have missed her greatly the past 6 months through the many days of split parenting and even in all of this with Esther and what our older 4 are going through, I think about her the most of anyone. I am so grateful to have her as my wife. With all of the stress of this season of cancer, the pivot point of it all has been on our marriage. You can hide it with Esther or with our kids or with other people, but you can't hide it in your marriage. It's easy to reflect that stress to each other probably because it is our safest relationship.

But I can't imagine all of this without her. I have seen faith and a trust in Jesus in her deeper than I have ever seen. Even in all of this, I am amazed at how her heart still pushes outward to how she can bless others while I just want to crawl into my shell. She has such a love for our kids and is a true refuge and comfort to them. And I am blown away by how hard she has worked to still maintain our home(s).

And I'm not joking when I tell you that the nurses all just love and adore her! She brings them gifts and treats and really has taken a vested interest in their lives. Our nurses absolutely love Esther, but Sam has been such a fragrance of the gospel on this floor of sickness and harsh realities.

11 years is not enough with you, sweetie. I look forward to whatever God has for us together. You are my earthly refuge and best friend. I love you. There is no one else for me but you.

 

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Parenthood and Isaiah for a Christmas in the Hospital

What a difference just one year makes. If you had told me a year ago that I'd be spending the holiday season of 2012 watching Peyton Manning lead the Broncos to a 10 game win streak and in the hospital with a stage IV cancer fighting Esther, I would have laughed (Broncos get Peyton?) and been shocked and anxious. How would we be able to handle Esther having cancer? How could we even endure just a few months of treatment? And, of course, I would have asked this question: How could the Broncos get rid of Tebow?

But here we are. The Broncos somehow have Peyton Manning, are a ridiculous 12-3, and are the prohibitive Super Bowl favorite. My Christmas has been spent getting up early, watching Esther open up a few gifts with Sam, and then finally catching all the way up on Parenthood and spending a good chunk of time in the book of Isaiah while Esther takes a 4+ hour nap (she's still sleeping...).

Parenthood Season 4. Wow. Just wow. I really don't want to spoil it for anyone but let's just say that you'll figure out early this season how close it hits home to Sam and I. And it worked out that I ended up watching the latest Christmas episode today. I needed the Kleenex box for sure. One character's move to prayer just broke me. But good art ministers to the soul. And Parenthood is damn good art (pardon the expression but this show deserves it). It's so well written and acted that it feels so close to reality in many ways. After 3 and half seasons, I love this fictional family. Sure, there are characters you just want to punch in the face sometimes, but even those characters make sense. I love how they don't simply change absolutely but their evolution is realistically slow and minor. But what ministered to me today is simply the fact that someone out there gets my reality. It makes me feel just a little less alone. The show also makes me miss my father in many ways, especially during this life turned upside down season.

Let's just say that I am hugely far behind in my Bible reading plan this year. I'm such a scheduled normally routine nerd, this just kills me! It feels like a minor failure to not finish my plan as usual. But there are yet 7 days left this year! Today I spent a bit of time cruising through Isaiah. I was moving through it pretty rapidly until this passage halted me:

On this mountain the LORD of hosts will make for all peoples

a feast of rich food, a feast of well-aged wine,

of rich food full of marrow, of aged wine well refined.

And he will swallow up on this mountain

the covering that is cast over all peoples,

the veil that is spread over all nations.

He will swallow up death forever;

and the Lord GOD will wipe away tears from all faces,

and the reproach of his people he will take away from all the earth,

for the LORD has spoken.

It will be said on that day,

"Behold, this is our God; we have waited for him, that he might save us.

This is the LORD; we have waited for him;

let us be glad and rejoice in his salvation." (Isaiah 25:6-9)

In the middle of the prophesies and sometimes drudgery of Isaiah pops this passage that spoke directly to my soul. God planned for me to read this today. There is no other way to say it. This passage is what I hope we celebrate today in our various family traditions and forms. Jesus came to swallow up death forever. He didn't come to give us rules, to steal our joy, to be our dictator, or to make us feel guilty for all our shortcomings. Jesus came to free us from death and to restore our true joy in Him. He came to wipe our tears. He came so that one day he would prepare a feast for us.

The fact that he will wipe away our tears infers that we will have many in this life. The past 6 months have been true to that. There will likely be plenty more before this life is done. But he wipes them away. He is near and not far.

Today I ate the special Christmas meal in the hospital cafeteria. The turkey and mashed potatoes were ok, the sweet potatoes and apple pie were extremely bland. My enjoyment of food has been greatly minimized in the past 6 months but that's not a big deal, it's probably been really good for my heart. But Jesus is preparing a feast beyond my imagination. It's coming faster than I probably realize. It may come sooner that I want for Esther.

You know how many presents I opened today? None. You know how much I really care about that? None. Honestly. I realized last night and today that what I missed most was not even watching my kids open their gifts. I missed just being with family (Sam and the kids are with her family). I realize sitting here that my family and my extended family are huge gifts that I easily take for granted.

And the passage above from Isaiah reminds me yet again of the gift of salvation that I so easily neglect and forget. So I will rejoice in the gift He has given. Life. Freedom. Hope. A feast to come. Access to and friendship with the one true God who is near and who came to us as a humble baby born in a stinky manger. Joy and peace.

And FaceTime. ;-)

Esther is still sleeping (it's a 5hr nap now...)! She'll need platelets again this evening. She just finished a blood transfusion earlier. Transfusions are now a daily occurrence until her body has the capacity to rebuild itself.

Merry Christmas! We cannot express enough to our family and friends and even strangers that have blessed us what a gift you all are to us this season! You have been His hands to wipe away many a tear.

 

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Merry Christmas

“O Holy Night”

The perfect song for our year….

O Holy Night! The stars are brightly shining,
It is the night of the dear Savior's birth.
Long lay the world in sin and error pining.
Till He appeared and the Spirit felt its worth.
A thrill of hope the weary world rejoices,
For yonder breaks a new and glorious morn.
Fall on your knees! Oh, hear the angel voices!
O night divine, the night when Christ was born;
O night, O Holy Night , O night divine!
O night, O Holy Night , O night divine! 

Led by the light of faith serenely beaming,
With glowing hearts by His cradle we stand.
O'er the world a star is sweetly gleaming,
Now come the wise men from out of the Orient land.
The King of kings lay thus lowly manger;
In all our trials born to be our friends.
He knows our need, our weakness is no stranger,
Behold your King! Before him lowly bend!
Behold your King! Before him lowly bend! 

Truly He taught us to love one another, 
His law is love and His gospel is peace.
Chains he shall break, for the slave is our brother.
And in his name all oppression shall cease.
Sweet hymns of joy in grateful chorus raise we,
With all our hearts we praise His holy name.
Christ is the Lord! Then ever, ever praise we,
His power and glory ever more proclaim!
His power and glory ever more proclaim!

A thrill of hope the weary world rejoices...

   In a journey bringing despair, there has been thrilling hope. Our weary hearts still rejoice. 

In all our trials born to be our friends.
He knows our need, our weakness is no stranger,

God is our friend, faithful and kind.  He meets us, all of us, exactly where we are, knowing our need, our weakness.  His hand is gracious and in control, His plans are for our good.

Truly He taught us to love one another, 

The love we have received has been rich, comforting, healing, miraculous.  We have treasured each prayer, word of encouragement, and gift.  We love because God first loved us, God is love (1John 4:19, 4:8).  We have seen God abundantly, have been cared for and nurtured through your love.  

Thank you, well done. 

Sweet hymns of joy in grateful chorus raise we,
With all our hearts, we praise His holy name.

We praise God for the unfolding of this year.  These grateful songs rise up not out of the good of our own hearts, but out of God’s heart for us...to give His life as our ransom and a promise that this earthly life is not the end.  This brings joy and peace surpassing all understanding.  God is holy and perfect, our hearts full response is praise. 

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

Jeremiah 29:11

We have clearly seen God’s plan for our good this year.  Even in cancer.  Even in suffering.  In even our daily life.  God has shown us hope, a future rich with His steadiness.  His plans we do not know, but there is not fear in that truth.  His plans, for our benefit! 

God knows in the trials of this life, it’s all so difficult to understand, but He is near to each of us, close to the brokenhearted.  He stores our tears in a jar and welcomes us, as we are, at his throne to find grace and mercy, help in time of need.  

Kneel at that throne & pour out your tears.  God cares about all our tossings...our big, cancer tossings & our smaller daily cares.  He cares for it all as our friend.

We pray you find thrilling hope this Christmas and your weary heart rejoices in all of God’s love for you.

Merry Christmas!

Anthony, Sam, Rourke, Lydia, Francesca, Zinnia & Esther

She looks like a melphalan +4

Melphalan is one of the chemo drugs Esther received and today is Esther's 4th day after transplant, +4. As our day nurse was giving report, telling our night nurse about Esther she said she "looks like a Melphalan +4." Melphalan +4 is not pretty.

Today Esther was learning the art of a pain pump and As I've thought about the severity of this treatment, how utterly horrifying it is, I am struck by the aggressive nature of Esther's cancer. How left to itself, it will cause unbearable pain, deteriorating her body and taking her life. I've never really been fearful of cancer, even up to this point, but today, I found myself coming to an understanding of how terrible it really is.

I was talking with Esther's nurse about her age and how I'm thankful she won't remember much of this. I think she will remember, but won't have memories. This is a gift to Esther. She mentioned that the memories will probably be more difficult for me. I agree. These last couple days have been hard, really hard and very ugly. Esther's body is breaking down, she would not survive without this stem cell rescue. It is horrible.

Esther is now on a pain pump with a constant level of morphine and then a button she can push as needed for a boost of extra pain killer. She is also receiving a little "blow by" oxygen. This means the oxygen is coming from a tube near her head, but not attached to any airway. She needs every bit of pain medicine.

The other night I went for a walk. I was hoping to get a burrito from Big City, but I learned it is only open until 4pm. On my way back I tripped and fell. I cut my hand and have various bruises and lesions on my shoulder, leg and knee. I feel a little beat up, but honestly, I feel like seeing Esther suffering like this has left my heart far more wounded.

Overall, she is doing what she's supposed to be doing. She is Melphalan +4. Many other kids have been there and are better now. I just have to keep looking ahead to that, they are better, this is not forever. Pray I would be soft and not just shut down. I feel like shutting down.

Pray for wisdom in Esther's pain management and for her sores to heal quickly. Pray for her blood oxygen level to remain steady. Also, Esther has spiked three fevers over the last day. This is expected, but worrisome.

As long as no one else gets sick in our family, Anthony and I will switch Tuesday morning. Pray I'd be ready to engage with the other kids, that I'd give my heart despite my own hurts and exhaustion. I need to approach the throne that has provided so much grace, help and mercy in my time of need. I am constantly working on reminding myself of truths... God is good, there is wisdom in His plan, He is readily available all the time, He will sustain.

I am at the end of myself, He is here to carry me when I can't take another step on my own. Pray I'd pour out my tears before the cross and just crawl into His arms. This prophecy, this Christmas prophecy has been my meditation today....

⁶

For to us a child is born,

to us a son is given,

and the government will be on his shoulders.

And he will be called

Wonderful Counselor, Mighty God,

Everlasting Father, Prince of Peace.

Isaiah 9:6

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Nothing like an all nighter....

Thank you for all of the responses and eager questions about donating platelets. It's looking more and more like Esther's going to need a bunch.

Last night we pulled our first all nighter....an all nighter of nose bleeds. Esther's transfusion parameters are already higher than normal, but after last night, the doctors increased her parameters even further.

Her first nose bleed began about 12:30am and lasted about 20 minutes. It wasn't gushing, so that is good, but was a steady drip. There is a nasal spray that constricts the blood vessels, this helped to stop the bleed. Esther's nurse drew her labs and sent them down right away to get the process rolling for her to get platelets. We were up for about 45 minutes between the bleed and then sucking out the mucous. I laid down about 1:15am

Well, about 2:45am she had another nose bleed lasting over 10 minutes. We got that one stopped as we waited for platelets to arrive. She was doing okay, I laid back down only to get right back up for another nose bleed. This pattern continued all night, even after her transfusion. Add in an upset stomach from the blood and gallons of mucous, it was just a really long, yucky night.

The general transfusion parameter for the oncology kids here is 10. Esther's was bumped to 20 because of her nose bleeds. BMT parameters require transfusion at 20, so they had already bumped her up to 30. After last night, if her platelets are below 40, she'll require a transfusion. The nurse said that will likely be every day, maybe even twice.

So...blood and platelets are in demand! So many of you have asked a questions about donating blood products here at Children's, THANK YOU! There's even some California girls in town for Christmas who are going to donate.

Several have asked if the blood or platelets can go directly to Esther. The answer to that is maybe. I need to verify, I think there is a waiver I need to sign to allow someone to donate specifically for Esther's use. Also, Esther's bloodtype is A+. I remember something about only transfusing Esther's bloodype unless there is a shortage of A+, then they will use the universal donor's list. I will look into this on Monday and let you know. Thank you so much! This really is a gift of life for the kids receiving your blood or platelets!

If you'd like to learn more about donating blood or platelets at Children's you can visit this website: http://www.childrenscolorado.org/give/blood/index.aspx

For informaion about platelet donation, visit this website http://www.childrenscolorado.org/give/blood/apheresis.aspx.

They are very quick to respond either by email or phone and are always eager for donors! Thanks for all the desire to help. Sorry for typos and strange text...I pulled an all nighter and it's caught up to me!


 

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Starting to feel pretty bad

While today brought dissapointment, there were some very fun things. We will write more about the Snow Pile and the Holiday Boutique at Brent's Place tomorrow. Lydia wore a mask and the kids were able to participate in the festivities.

Esther opened a birthday gift from Aunt Melody today. A fun flower set where she can stack and build flowers. She played with it several times today, a very fun toy!

Esther had an okay day today. I'm sure compared to the worst of it, this isn't so bad.

For tonight, some specific things to pray over Esther's body.

• For her skin. It is breaking down and the slightest tug is leaving her skin raw. There is a particular patch of skin near her armpit on the right side that is very bad. We put a dressing on it tonight that will help protect it from her clothes, but if it gets worse the nurses can call a wound nurse from the burn unit to help soothe her skin.
• For her pain. Tonight her resting heart rate was in the 160s. She doesn't complain of pain, but withdraws and goes quiet. After we gave her a dose of narcotics, her heart rate responded.
• For her mucositis. This is the term for the sores in her GI tract. When it becomes irritated her body tries to protect itself by producing a thick mucous. She started using a suction tube to help clear it out of her mouth because it just doesn't end. No amount of spitting can get it out. She is handling it well and likes the suction tube. It is similar to the one at the dentist. Our dentist calls it "Mr. Thirsty" and she thinks it's fun to call this one the same name.
• For transfusions. She had a platelet transfusion on Thursday and will have another this morning. Her red blood cells are hanging in, but her platelets are not staying up. This is particularly important because there is bleeding accompanying her mucositis and because of her history of nose bleeds. Please pray for donors. I know at this time of year everyone is very busy, but if you have time and wouldn't mind a trip to the Children's Hospital, would you please consider donating platelets? It takes a couple of hours. I've written this before, but platelets are harder to come by. They only last a few days, so it is not possible to build a stock. Esther will have many, many platelet and blood transfusions. Pray for safe transfusions.
• There is a national lipid shortage. Lipids are a fat that can be given through an IV. The hospital has canceled all lipid orders for patients except those who are critically underweight or babies in the NICU. This wouldn't be too big of a problem except Esther can not eat dairy right now and most of the things on the menu that have fat also have dairy. Another problem is that she just isn't eating. Today she ate one bite of oatmeal, one tiny bite of a banana, one bite of applesauce, and 1/4 of a popsicle. This is to be expected, but some creative ideas on getting some fat into her body would be great. She is still getting other IV nutrition, so her body is being nourished, she's just missing some of the important fats.
• For her kidneys to be functioning properly. Her electrolytes have been a bit off the last several days. This could be from poor nutrition and not eating anything or from struggling kidneys.
• For health in our family and wisdom in contact with each other.

 

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ARGH!!!!! Disappointment hurts

Yesterday was a pretty good day for Esther. Her body is starting to break down a bit as the mouth sores are beginning to surface. It's not just in her mouth, but her entire digestive system. We started a narcotic this morning to help ease the pain.

She had some water fungus in her nose when we did her work up before she was admitted causing her to need to use a pretty nasty nose spray. The nose spray has been giving her nose bleeds. In a culture she had completed before she began chemo, the culture was negative, so they decided the nose bleeds are more problematic than the need for spray, no more nose spray.

The ARGH!!!! is because Lydia threw up in the night last night. Never, in our family history, have we ever had such a time between vomit. I still am not convinced this is a virus, but it could be, especially since now someone else has thrown up.

This is incredibly disappointing for many reasons.

First, today was going to be a really fun day for the kids. They are hosting a Holiday Boutique where the kids get to shop for each other. They were so, so excited. Now, they can't go.

Second, Anthony and I were going to switch. Now it's not really clear when/if we should. If there is a virus in our family with such a long incubation, how do we know when everyone is okay?

Third, we could have had a pass to let the kids come visit Esther for two hours. We were thinking Christmas Eve. Now, we probably shouldn't let them come at all.

I am pretty heartbroken right now. These circumstances are already so difficult and all of this just really sucks.

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A Second Birth Day: Stem Cell Transplant

The nurses on the BMT floor wished Esther another happy birthday today. The chemo she received this last week is marrow-ablative. That basically means it completely destroys her marrow. She would likely never recover from this sort of treatment because her body's ability to make basic cells is gone. Her body's ability to create cells was birthed today. For kids (and adults) who receive stem cells or marrow from another person, it really is new life. Their DNA is altered as their basic cell building functions is now run by the DNA of another person. This all still amazes me.

Esther's transplant went well and was for the most part uneventful. Her cells came up out of the liquid nitrogen, frosted. They went straight into a special bath that brought them up to body temperature.

The bag was tiny, my iPhone is bigger than bag and volume in the bag was just 10mL. That is just two teaspoons! In those two little teaspoons were MILLIONS of cells.

The tech from the BMT primed (pre filled the tubing so there is no air in the line when the line is hooked up to the patient) tubing with the cells. The little bit filled the entire line of tubing.

Esther's nurse was busy prepping for this 10mL infusion all morning. She brought in a computer, hooked Esther up to the monitors, and spent a fair amount of time preparing the pumps and tubing for the transfusion. With such a small volume, even just a few drops contain a significant amount of cells, so any amount lost in the tubing can add up to a large loss of cells.

One of the portions of her set up was this syringe. On one end it was connected to the bag of stem cells and the other direction went to Esther. This allowed her to pull the cells from the bag into the syringe and then she could know exactly what volume was drawn from the bag and then put back into Esther's body.

Esther's nurse was again Rebecca. She did a great job! Here she is pulling the cells into the syringe.

Next the syringe was hooked up to a pump and the first bulk of cells were administered to Esther over about 30 minutes.

 

After the initial infusion of cells, Rebecca pulled saline from a third line on this syringe in order to "rinse" the bag and tubing and then infused those cells and saline over an hour. She then rinsed the bag two more times. The second and third rinse were faster because she could just push the saline in. The idea is to not leave any cells in the bag or tubing.

There was one hiccup. Sometimes in the freezing and thawing process, platelets in the collection will clot and form a particulate in the cells. There is a filter in the bag, but they got passed the filter and went into the syringe. This made it all tricky because it wouldn't be good to infuse a glob of clotted platelets into Esther's body. She did a great job of managing this booger floating in the cells and saline and was able to get all of the cells and trap the glob at the very end. They sent the tubing, bag, syringe, and glob back down to the lab to verify the suspicion it was indeed platelets. You can see the glob at the bottom part of the syringe directly above my thumb.

Rebecca suggested we name the booger. Esther decided to name it "Carla." Carla is also the name of a nurse here whom Esther loves. What a silly girl!

Stem cell transplant complete!

Esther handled everything so well today! There is a preservative that protects the cells during the freezing process. This preservative causes Esther to emit an odor reminiscent of creamed corn, but maybe that creamed corn has sat out a bit too long. It should go away in a day or two, but for now, Esther is quite stinky. You can smell it as you open her door, quite strange.

Praise God for this day and science that is able to treat this cancer! As I was talking with Esther's nurse today, she mentioned that when we first became an oncology nurse over 8 years ago, it was not common for families to choose to not treat neuroblastoma because the survival rate was so poor. In that time, leaps have been made to give these kids a chance and stem cell transplant is one of those big leaps!

Now the job of the cells is to find the empty places where Esther's marrow once lived, engraft there, and begin to create the basic building blocks of physical life, red and white blood cells and platelets. Thank you for praying. I also heard of people fasting yesterday and today, thank you for loving Esther in this was committing yourself to prayer. We are thankful.

 

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A Birth Day

Four years ago tonight I was holding two bald little girls. One was the tiniest baby I'd ever seen with fuzzy blonde hair, 4lbs 8oz. The other came two hours later, 5lbs 6oz. Her hair was dark and her eyes big. Zinnia Naomi wanted to eat. Esther Gwynne was peaceful and let us know she needed something with a soft, feminine cry. Two little girls.

I never thought we'd celebrate a birthday in a hospital, let alone a birthday with just one girl. Today was a bitter sweet day. Esther asked about Zinnia several times through the day. Was she opening gifts? Was her cake good? What is her Lalaloopsie doll? She told every person she saw today that her cake has ballerina slippers and Zinnia's has a crown and a wand. She was mindful of her sister all day. Here are some snapshots of our day...

She got a phone call from a few of her friends first thing this morning. They sang Happy Birthday and asked if when Esther is better they could watch Tinkerbelle together. These friends used their own money to buy Esther these gifts, chapstick, a AWESOME 96 count of crayons and a giant pad of paper on which to color

Breakfast. Not coffee cake, although I'm pretty sure at least one Alvarado had cake for breakfast over at Brent's Place. Esther's appetite has dwindled to really nothing. She has lost about .7kg since checking in, that a little under two pounds. Last night she started partial IV nutrition to help make up some of the calories

Bathing beauty! Esther has to take a daily bath. Her Broviac site can't get wet and the best way to keep it dry is a common household material...Press & Seal plastic wrap.

 

She opened her presents....

And then tried them out. She'll need a hat for now, but in a couple months those ear muffs with compliment all of the hair in keeping her warm!

This Lalaloopsie dool is named "Dyna Might." She wears a cape and is ready to fly through the air with her awesome super hero goggles. Her personality is "speedy and brave." Dyna is the perfect choice for this brave girl.

Birthday cake! Esther was very, very excited her cake had ballet slippers and she said it smelled delicous. It is delicious! Esther had a few bites and asked if she could eat the fondant slipper. I gave her a little and then she threw up...guess a fondant slipper has a bit too much sugar :). She didn't care asked to eat the other part of the slipper a little later

Esther's nurse made a sweet card for her and the other nurses came to sing Happy Birthday. As you can see, she pretty much thought it was the coolest thing ever.

I know it's sideways and note quite clear. She stared with the BIGGEST smile on her face for the whole song. Very cute. They gave her a fun Polly Pocket set with 10 dolls, including a guy named "Rick." We changed his name to "Ricardo" because we got to see Mr. Ricardo today. Ricardo was our first oncology nurse and he did a fantastic job of easing us into this new life. He's taken care of Esther several other times and happened to be on the BMT unit today. She adores him and now has a doll named after him.

Esther wore her fancy dress all day. It's her Christmas dress, but birthdays work too. It made our time looking at Christmas lights all the more sparkly.

Before bed we visited with the rest of our family via FaceTime. Esther was very concerned about Zinnia and was desperate to make sure Zinnia knew she loves her. It was very sweet. Anthony and the kids sang Happy Birthday once again to Esther and we got to sing to Zinnia. As we sang to Zinnia I was struck with how much they love each other.

I think this has been hard on our sweet little blonde Zinnia flower. She was throwing up again last night. I was already here with Esther. Anthony has no also been around Zinnia, so if she has a virus, we are both susceptible to having it or bringing it here to Esther. I'll be here until we can figure out what is going on with our little girl. It is a strange throw up, containing undigested parts of meals she'd eat the day before, namely green beans (sorry, it's gross, but hey, we Alvarados are keepin' it real). Anyway, I am thinking about what could be causing this illness... Did I get a bad batch of green beans? Is she allergic to something at Brent's Place, a new cleaner or something? Does she have cancer of some sort that makes you vomit? (it's hard not to go down that path). Is she really stressed out? I have come to wonder if it's a "twin" thing.

Maybe it's just a virus and we'll need to trust God to not allow anyone else become sick, but maybe it is a physical reaction to this road. It's a lot for any child to endure, but I think especially difficult when your best friend who has been next to you every day of your life has been torn from your side and is suffering. We've seen with both sets of our twins they never were attached to any lovey, they had each other. When they are scared or hurt they often go for each other. During movies they will snuggle next to each other. It is an interesting bond between multiples.

Please pray for Zinnia's illness to be very clear and for discernment in when it is best to switch here at the hospital.

Quite honestly, the last four years have been hard, cancer aside. Having five little children in less than 4 years has taken all of me, revealing my need for God's help in every circumstance. While the last four years have not been "textbook" in my walk with the Lord, He has proven Himself over and over again. It's not about how well I've studied my Bible, journaled, memorized verses. I've seen over and over again that it is not about what I do. I can not earn God's favor because it's already given. I don't have to earn His company or help. He is there, willing and ready. His mercies are new each morning and His throne of grace is my place of rest. As I kneel to pour out my heart he catches my tears, holds me close and strokes my hair. He gives me grace for the day, corrects my heart, walks with me...it's a walk! He will lead me along the journeys this life holds, let me stumble and cut myself on the brush when I stray and is there for me in the lush, soft green patches.

This is the God who is in control of Esther's future. His goodness and wisdom is trustworthy.

Esther has a different blood type than I, and it caused her to need time under the bilirubin lights. It is strange how much this little girl looks the same, sleeping here tonight.

Happy Birthday, Zinnia and Esther. I love being your mommy and praise God I get to be YOUR mommy. I thank God He gave me each of you as my daughter, I would choose no others.

 

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