Monday, December 31, 2012
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!
Saturday, December 29, 2012
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...
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?
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.
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 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.
Jesus Christ is the same yesterday and today and forever. (Hebrews 13:8)
Friday, December 28, 2012
|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.|
|Opening up their gifts from Esther.|
|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.|
Thursday, December 27, 2012
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).
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.
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)
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.
Tuesday, December 25, 2012
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...).
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:
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.
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)
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.
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.
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!
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!
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!
He knows our need, our weakness is no stranger,
With all our hearts, we praise His holy name.
Sunday, December 23, 2012
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....
Everlasting Father, Prince of Peace.
Saturday, December 22, 2012
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!
Friday, December 21, 2012
|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!|
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.
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.
Wednesday, December 19, 2012
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.
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.
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!
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.
Tuesday, December 18, 2012
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.
Monday, December 17, 2012
When I finally made it to her room she was very sleepy, but after just a little bit she perked right up. Her sweet nurse, Rebecca, said it was the most she'd seen her talk all day. She walked me through the photo book I made of her family, showing me all of her favorite pictures of herself, her brother and sisters, cousins, and other various family members.
Anthony has done an amazing job of setting her into a good routine. I am so thankful for his diligence to work for her benefit, he has been a good teacher. She impresses all the nurses with her attitudes toward taking medicine and care related tasks. Praise God for her disposition, He has prepared her well to endure with such grace.
Tonight at Brent's Place Anthony and the kids got to celebrate Zinnia and Esther's birthday with lovely cake from a Denver bakery called DBar, apparently the pastry chef who opened this dessert dining experience is a regular on Food Network. Brent's Place gets all of their cakes from this restaurant and honestly, they are incredibly delicious!
We've always given our twins two separate cakes and sung Happy Birthday twice. Tonight was the same. Zinnia's princess cake was enjoyed by everyone at Brent's and tomorrow Anthony will bring Esther's smaller ballerina cake for us to enjoy here. Zinnia did a great job blowing out her candles and thanks to the magic of FaceTime and a wave of Anthony's hand (no need for anyone to actually blow on the cake of the girl with no immune system), Esther "blew" out the candles on her cake as well. FaceTime has been a wonderful gift over these last couple of months, it cheers Esther so much to see her brother and sisters. We have shared meals and lots of silly faces and tonight shared a birthday celebration.
Esther and I also worked to prepare a birthday celebration in the hospital.
Esther is doing really well. As her counts have begun to drop she is beginning to show signs of mouth sores. She also is very flushed. I noticed immediately when I came in the room that she looked like she has a sunburn. The doctor wasn't quite sure what to make of it, but will monitor it closely. Please pray for wisdom and protection from whatever may be causing this coloring in her skin. Thank you for your continued love of our family. We are incredibly blessed.