Paul & The Dragon Trailer

Thanks to my super film savvy second or something cousin, Gabby....here's a trailer to preview Paul and the Dragon. It is so good!

Esther had a pretty good day today. Rourke wanted to go home, so Anthony came down to pick him up. He was complaining of a runny nose. I've been hounding him to tell me of any symptoms right away.

He nearly skipped to his room to pack his stuff and then was counting the minutes until Anthony arrived. He had been giving me hints he missed home and his sisters, so I wasn't surprised when he fessed up that he just really missed home.

I have to admit, I am really sad he's not here. He is such a good big brother, and I am very proud to be his mom. Next Tuesday he will be 8! He has been telling me all week that on Sunday he wants to have dinner here all together so that he can have Esther at his birthday too. Please pray we'd all be healthy enough to celebrate his birthday dinner together. He is so sweet, it about kills me...it might also be killing me a bit that mom wasn't as fun as home. :,(

This was on Sunday, commanding the ship in the Brent's Place playground. He likes to pretend it's a space ship and the maze behind him is all of the controls.

 

 

 

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PJs and Bald Heads for Kids!

I've been wanting to write about this for a while, and time is running out! I do my best work under pressure, maybe you do too.

As I've learned about childhood cancer I was very surprised to learn about how little awareness and funding is actually out there. For example, in the last 20 years, only two new drugs have been approved by the FDA to treat children with cancer. Pharmaceutical companies don't like the fund research because there's not a lot of profit in drugs for a small population. Research can be difficult because there aren't large sample sizes. The biggest problem is that in both the public and private sectors, pediatric oncology is VERY, VERY poorly funded and the coming budget cuts have the potential to stop research that is saving lives.

Esther is currently receiving radiation. The radiation is penetrating right through her reproductive system and will kill her ovaries. Esther will never have biological children. She also has a significant hearing loss. Could research be done to help these kids both survive the number one disease killer of children AND preserve their bodies?

This research will not happen until there is more awareness of pediatric cancer. Before this I had no idea the ribbon for childhood cancer is gold and September is Childhood Cancer Awareness month. Here's a few fun ways to support kids and raise awareness of childhood cancer.

PJ Days

The American Childhood Cancer Organization has given us, free of charge, some of the best resources as we've navigated Esther's cancer. One is a great book about being a sibling of a child with cancer and the other is an EXCELLENT, short video called "Paul and the Dragon." This video is really amazing. It is funny, sobering, real and has no words. It communicates fear, pain, treatment, victory, and fight better than any number of words could. I would say it's for all ages and it helped our kids understand and have hope.

PJ Days is an awareness campaign by the ACCO. The idea is that kids who have cancer spend a lot of time in their PJs, so let other kids (or grown ups) wear their PJs for $1 and learn a bit about childhood cancer. Not the most fun topic, but I know lots of little ones are praying for following Esther's journey. They know their friend is sick but they might not understand it.

The event kicks off the Monday, February 4th (World Cancer Day) and ends Friday, February 15th (International Childhood Cancer Day). If you wanted to organize an event (or a playdate) there are many great resources and ideas on how to talk to kids about cancer. My favorite suggestion is to watch Paul and the Dragon and then go over a few discussion questions. I think I read ACCO is providing free copies of the video to teachers. We have a copy in Ft. Collins if you'd like to borrow it. At the least you could watch the movie...it's so good. In any case, check out the PJ Days, it could be a neat way to create awareness about childhood cancer.

Shave Your Head

St. Baldrick's is a GREAT support of research for kids with cancer. They support research for treatment and also supportive care for how to help some of those side effects. They fill in the HORRIBLE funding gap for childhood cancer research. Research that is desperately needed. This statement pretty much sums it up...

"But even for kids who survive, the battle is not over. Because of the treatments they had as kids, by the time they’re in their 30s or 40s, more than 73% of survivors will have a chronic health problem and 42% will have severe or life-threatening conditions." ~St. Baldrick's "About Childhood Cancer"

One of the ways they provide that money is a Shave-A-Thon! Check out this video. Wait...grab a kleenex first...okay, now go...

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Colds, Care, Giggles, Car Rides, Burritos & Bling

Esther's 5th day of radiation is finished and we're all doing okay. We had to switch a day early, on Saturday, because Zinnia started showing signs of a cold. Rourke and I are here with Esther and Anthony and the girls are back in Ft. Collins. Zinnia has a full blown cold and Frannie has a runny nose. Lydia is fine so far, but has been breaking out in hives the last week. We're looking at what might be causing the hives, starting with some diet things.

One thing about the way an immune system comes back is it's in stages. There are five different types of white blood cells. The cells that take the longest to come back are those that fight viruses. When I asked the doctor about Esther's ability to fight a cold at this stage in the game she was very blunt in saying that it will be very difficult. WHEW...deep breath.

I've been praying for mercy, that Esther would not catch this virus and that Rourke and I would remain healthy. Please pray she would be healthy.

My sister, Robin, is going to organize and restart our care calendar for help in Ft. Collins. This has been a tremendous blessing and gift for our family. We could not do it without your support. If you'd like to be on the list, you can email us at victoriousishername@gmail.com. Thank you for continuing to hold our family up this way.

I just want to ask that if you sign up to help us, please know you will love us far more by not exposing our family to something than by completing your task. If there is someone in your family who is ill, you are likely exposed and we'd appreciate you loving us by calling a back up or just letting us know you won't be able to help out. We are fine and cereal for dinner is okay. Our chickens started laying eggs again, so we can always take a trip to the coop for some protein.

Also...this really shouldn't have to be stated, but please love other people in the same way. If your children are sick, the loving thing to do is not share it with other kids, take them to the library, put them in the nursery at church. Wash your hands frequently or use hand sanitizer if you can't wash with soap & water. I really don't care about the claims about the effectiveness of hand sanitizer...if the alcohol content is over 60%, it will help, but you have to rub it for about 20 seconds for it kill all the germs. If you're worried about other chemicals in hand sanitizer...you can get some that are only alcohol and aloe vera, there are recipes online for natural hand sanitizers or I recently heard of someone who uses vodka. The common thread is a min 60% alcohol. The biggest argument against hand sanitizer is that it doesn't work if you touch something after it's dry...DUH! Neither does hand washing. If you wash your hands and touch something, it's the same thing. Yes, this is a soapbox, but when your child could die from a cold and I hear grumbling about hand sanitizer...it sort of pushes my last button, and I have do some heart work to think loving thoughts.

I have never been a germaphobe, I've always taken the position that germs will build my children's immunity. I still lean that way, but when there is no immunity in the picture, it makes you a little neurotic. Exit soapbox.

Okay...on to more fun topics. Giggles, car rides, burritos and bling.

Rourke was a great leader today and showed me the ins & outs of radiation. When we were walking out of the radiation clinic to the car she was flat out enjoying the lingering effects of the propofol. She was giggling, wiggling, and flinging her arms around. The look on her face was like this anesthesia experience before her surgery in October.

We headed over to the hospital after her radiation and her numbers look so good! Her red blood count was low on Friday so the automatically planned a transfusion for today. When the results came back (and her transfusion was already started) her reds had come back up! We finished the transfusion because it was still in the low range. Rourke found a perch to do his school work and Esther enjoyed time with the child life specialist, Ali.

Esther made paper dolls and purses with Ali. She's a CSU Ram and we have the same degree. Nice to see a Ram every once in a while! Don't forget to find Rourke doing his school work.

Found him!

 

A blood transfusion is a three hour process, minimum. So by the time we got to the car Esther was asking for lunch. When I asked her what she wanted she said, "Proooobably Taco Beeelllls?" When the only goal at this point is calories, I obliged. The doctor today told me to not worry as much about healthful choices, caloric choices are more important.

The Taco Bell is about a mile away. I was driving about 40 and Esther was saying, "WEEEEEE" in the back seat. She has not ridden in a car beyond the short drive to the hospital and max speed of 25ish since mid December. This was a like a roller coaster. She kept saying, "Go fast, Mommy, go fast!"

She was giggling so loud I could hear it through her mask and over the car sounds. She has to wear this mask outside the house for about 6 months (up to a year).

Mmm, mmm good.

This afternoon brought a long nap for Esther, and Rourke learned how to play Spider Solitaire. I told him it could be his math for the day.

Finally, my friend hosted a Silpada Jewlery party fundraiser for our family yesterday. The show is open until January 30th if you're looking for something shiny & new. Here are the details:

• Thank you everyone who has placed an order! If you haven't, there is still time, the event will close on the 30th, and 10% of all the orders will go to the Alvarado Family. Here's the link to order online: http://mysilpada.com/sites/laine.connolly-moore/private/content/home.jsf, then click Shop Now and Search for Hostess, Jennifer Ball. There are some really beautiful pieces in their new collection! Thank you again!

 

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Beauty When A Heart Breaks

On a walk at City Park

Living in such a flurry the last couple of months, well eight really, the last several days have been slow.  Aunt Margarita left today, it was great to have her here.  The girls have a renewed excitement for going on walks as it was a special treat most days she was here.  I am going to have to learn how to function outside such intense pressure and to cook again.

Esther finished her third radiation treatment today, 17 to go.  Please pray this eliminates any microscopic, stubborn cells that may cause Esther to relapse.  I have found myself fighting fear of relapse the last few days.  I think I understand what it means when we are told others could not weather this journey because I don't think I would make it if Esther relapsed.  There is enough worry for today, I've been telling myself this over and over.

Our friends, the Fryes, did have confirmation that Suzanne's tumor is malignant.  It is an extremely rare cancer, so rare that very little research has been done and there are only a few centers that have ever treated this tumor.  The shortened version is that she has Adrenal cancer.  They aren't sure the tumor was fully removed and there may be cancer cells in the margins around the tumor.  The family is doing research and consulting with facilities that have treated this type of cancer. Collin was diagnosed with AML Leukemia in August.  He did not respond to the first two chemotherapy treatments.  For the third treatment they used a more experimental therapy used in relapse. Collin's body responded, and he went into remission.  They are praying God would give them the same mercy for Suzanne's life, that when the light of day is black, there would be a shining grace.  Here are some specifics from the family:

• Wisdom and God's leading for us as we try to absorb a lot of information from many sources and then make a fairly quick decision about which place(s) to go for evaluation and where to pursue Suzanne's next step in treatment.
• Some periods of quiet and rest in the midst of the new flurry of activity to be able to absorb the reality of our new circumstances and hear from God how we are supposed to go about this.
• Freedom from fear and discouragement for Suzanne, especially as she considers all the possible implications of this.
• The same especially for Caroline, Collin and Ethan as we try to guide them in dealing with their own concerns about their mommy and what the future holds for our family.
• The same again for myself and all of our close family that are fully engaged in this, as we try to provide the right support to Suzanne, Collin and the other kids at the right place and time.
• God's mercy to be poured out again in this situation, much like we saw with Collin's sudden remission just six short weeks ago. 
• That He would stem the tide of growth of any of the cancer cells that remain in Suzanne's body, while we quickly seek out next steps for treatment. 

This family is living a nightmare anyone would confess to not being able to survive.  I am temped to say I couldn't imagine, the reality is that it's just too painful to enter into that kind of empathy.  God wants us to weep with those who weep, there is beauty in that kind of empathy and God meets us.

Tonight I watched the movie "October Baby."  It was good, a worthwhile watch and I was moved by the subplots.  Maybe it's because I am emotional today or something, but I felt like I could related to the main character a bit.  Not in the direct theme of the movie, but because I often wonder how life will ever return to normal.  The soundtrack is good.  I was struck by the lines of a couple of the songs...

The world is broken in too many pieces

But the brokenness is beautiful, it's beautiful.

Broken (Beautiful), Chris Sligh

How can brokenness be beautiful?  How can this world, broken in too many pieces, ever be beautiful?!  HOW?!

Life is full of hardship, and it all matters.  God doesn't look at our trials and change the way he comforts or cares for us according to the severity of the trial.  He cares about it all.  All of our brokenness is met with equal love and care from a God who hears, but we've got to take it to Him. A line in a different song in the movie caught my attention....

I woke up this morning

And I heard the news

I know the pain of a heartbreak

I don't have answers

And neither do you

I know the pain of a heartbreak

This isn't easy

This isn't clear

And you don't need Jesus

Till you're here

Then confusion and the doubts you had

Up and walk away

They walk away

When a heart breaks

When a Heart Breaks, Ben Rector 

(there's a link to listen below)

When our world is broken and in too many pieces, hope can not be in the pieces fitting together.   Most of the time we don't have control over the pieces before us.  Our striving is in vain, we are not the architects in this life.  This will cause heartbreak.   We can't avoid the pain, and our heartbreak is a gift as we are renewed in our need.  Over the last 13 years of my life, I have needed Jesus as my Savior, yes, every day.  But in my heartbreak, I enter into a vivid need...when I've screamed at my children, hurt a friend, wept over the lives of little children, admitted my own hurts, I've realized this full color need.  In those times it is beautiful and the confusion and doubts walk away because I'm open, raw.   Suddenly life is simple. My heart is broken and spilled out before the Jesus I didn't realized I needed in my pain, as well as my sin.  That Jesus loves me and has a hope and future for me.   Even if life is one heartbreak after another, and I have to wait until Heaven to escape any of it, He is good nonetheless.  That is beautiful.

  

Time to Get Irradiated?

Cancer treatment is nuts. Let’s inject chemicals into your body that destroy your immune and blood system. Let’s go a step further and inject so much chemicals that your marrow wouldn’t even recover without being given your own stem cells. But wait, that’s not enough. Now, let’s purposely shoot high powered x-rays at the area of the tumor (even if it’s not there) just to be sure. It’s insane when you think about it.

We got to the radiation clinic early for the first day of radiation treatment and I was just thinking about the other patients and family waiting (especially the young kid in the lobby we sat far away from that had an obvious cold!). None of them got good news. They were probably all living in their worst nightmare. Esther was great and, of course, had no fear. Rourke and I worked on his math and then Esther was all done.

We then headed over to the oncology clinic at Children’s Hospital across the street from the radiation clinic at University of Colorado Hospital. The usual 7th flood. Again, as we walked up, encouraged by the ease of the morning and how good Rourke was doing with his math, I thought about all of the folks in the lobby. The Chinese family (I could tell they were speaking Mandarin!) in the BMT waiting room. All of the folks in the completely full exam rooms. Our friends from Brent’s Place that we saw there. Our friends with their son, Boden, who is fighting a brain tumor (and who sweetly wanted to give Esther the stickers she has in the picture above). All of these friends and strangers got bad news. All of them got a big stomach punch and are now living this out. I was thinking about all of them.

Then he said to me, “This is the word of the LORD to Zerubbabel: Not by might, nor by power, but by my Spirit, says the LORD of hosts. 7†Who are you, O great mountain? Before Zerubbabel you shall become a plain. And he shall bring forward the top stone amid shouts of ‘Grace, grace to it!’” (Zechariah 4:6-7)

Our appointment went well. No transfusions were needed. But even when things are going well, the grind still continues. Over the past 40 days or so, I can count the nights I’ve spent with my wife on one hand. My older girls miss me. Esther wishes her sister were here all the time. We haven’t been to church in over 2 months. It’s been hard to get back in any swing of things at work. And it’ll still be this way for another month. Temporary but it doesn’t feel that way. I say all this just to be honest.

And also to be honest, I have struggled pursuing Jesus. My habits have waned and it’s even harder in the morning when in single parent mode. And I have neglected my intimacy with him. But Jesus is always waiting. Even in the minor prophets the past few days.

For whoever has despised the day of small things shall rejoice, and shall see the plumb line in the hand of Zerubbabel. (Zechariah 4:10)

This verse (and the verses further above) pricked me when I saw it tonight. Do I despise the little things, the day of small things? Do I count Jesus more satisfying than the little things of this world? Or do I seek my satisfaction still in my own comfort, my own agenda, my own control? A good gut check. Do I use my weariness as an excuse to not pursue time with Jesus? Do I seek my relief in distraction? This is how this verse speaks to me, especially after a close friend asked me (via text, hehe) how my relationship with Jesus has been and just how I’ve been honestly doing. Can I trust Jesus when I wake up tomorrow to despise the day of small things? Can I wait on him? Can I trust him to be my joy?

One day at a time. “Not by might, nor by power, but by my Spirit,”

    On that day the LORD their God will save them,
        as the flock of his people;
    for like the jewels of a crown
        they shall shine on his land.
    For how great is his goodness, and how great his beauty!
        Grain shall make the young men flourish,
        and new wine the young women. (Zechariah 9:16-17 ESV)

Thank you for your prayers and support! Pray for next 4 weeks of this nastiness to have no side effects but to be effective in helping make sure Esther’s cancer never returns.

Well, we're pressing on

Life just keeps going. We haven't had too much to update. I guess in normal life a blood transfusion would be a big deal, but this week was rather quiet. On the other hand, just one blood transfusion is pretty good for 30 days post transplant.

Rourke at Esther's blood transfusion

Overall, Esther is feeling pretty good. Last week she was struggling with some pretty strong stomach pain. At this age is very difficult to discern the reasons for the pain...is it her gut waking up, remnants of mucousitis, reflux, problems with IV nutrition, the result of taking a bunch of medicine on an empty stomach? She was crying a lot in her sleep throughout the night, so at our appointment on Friday the PA wanted to see if changing up her IV nutrition would help the stomach pain. Friday and Saturday night Esther received fluids through her IV rather than the comprehensive nutrition. This helped, she didn't cry either night!

Sleeping with her Huggable Hope Doll

She has been eating a little, a very little. She throws up pretty easily as her gag reflex is extremely sensitive, so little bits of food at a time are working. We are needing some discernment as to how much to give in to her requests, we could be breeding a very picky eater. She would be happy to only eat spiral macaroni and cheese from Target. All the work we did with our babies to teach them to eat what they are given may be a bit harder with a four year old...oh well.

Enjoying Spiral Mac & Cheese with Zinnia

The kids have been enjoying their turns at Brent's Place. Rourke went home on Monday, Lydia & Frannie spent the week, and Zinnia came on Friday. I went home for a night and am back for a couple days, Margarita had the great suggestion for both of us to stay. Tonight my mom is coming to hang with the little girls so Anthony and I can have a date! Yippee! Zinnia and I will go back home Monday and Rourke gets to spend the week with Anthony. Are you ready for your test of who is where now?

Frannie had NO problem being loud enough to call the BINGO numbers.

This next week brings Esther's first week of radiation. Her abdomen is marked with radiation stickers so the doctors can aim the beams in the right location. Because she'll have to lay perfectly still, she will be sedated for each treatment. The actual treatment is only a few minutes. This portion of her treatment is at University Hospital in the adult radiation clinic, right next door to Children's.
I am still operating in a fog. I did some school with Lydia and Frannie this week, we even did a project with Rourke via FaceTime. It felt good to do something "normal." We aren't attending Classical Conversations for at least the first six weeks. Given the intensity of the cold and flu season, and the high number of cases of whooping cough, the doctors thought it would be best to not attend. Not only does Esther have a general inability to fight infection, any immunization she received prior to her transplant is gone. Also, if we did send our kids, they would then not be able to come to Brent's place. The kids are disappointed, but understand it's really the best choice right now. They thought I did a pretty good job last week, so I think we'll make it.
Cancer is a long road for anyone. This week we learned my dad will need an additional three months of chemo and we also have been praying for a family we've met along this road. Collin is a 6 year old who is 10 days post transplant. Anthony and his dad, Tim, have a mutual friend. This week, Collin's mom, Suzanne, had surgery to remove a large mass that is likely cancerous. They are waiting on the pathology, but the doctors were not very positive regarding the tumor. Pray it would be benign, and for Tim as he must be torn between caring for his wife and his son, both in hospitals, in different cities. Pray for Suzanne, for her recovery, for their infant son, only a few months old, and for Collin's other two siblings. I have been brokenhearted that she is not able to care for her son although she knows he is suffering.
I've always been comforted by Habbakuk 3:17-19

17 Though the fig tree should not blossom, nor fruit be on the vines, the produce of the olive fail and the fields yield no food, the flock be cut off from the fold and there be no herd in the stalls,

18 yet I will rejoice in the LORD; I will take joy in the God of my salvation.

19 GOD, the Lord, is my strength; he makes my feet like the deer's; he makes me tread on my high places.

In these verses everything is bad...it doesn't just seem bad, it is bad. But it's not forever. Joy is not always vibrant and bubbly, sometimes it's a muted choice or hope in a promised future. I think joy can fluctuate, but God IS. He is our strength, He makes our feet steady in steep, rocky paths, and when we slip, we will recovery quickly.
One thing I am incredibly thankful for is that the darkness of cancer, of hardship in general, makes it easier to take joy in the little things. We don't need some big, major change to bring us joy, sometimes all we need is a sparkly shirt and tutu.

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Recovering

Tonight is my first time home in almost four weeks. It's nice, I think. At the same time, it feels strange, disorienting. I think it's because I want everything in order, I want to be in control. Yet, time will not allow, and I must choose to engage in the hearts of the three girls here with me rather than find peace in putting away the Christmas decorations and purging toys.
This is a strong clue that I am operating in a mode of anxiety. It is just like an eating disorder, it's not really about being thin, it's about control. I can't change the circumstances of life right now, so what is in my reach?
The last month, the last seven months have been pure survival mode. Just make it to the next day. I find myself living in a reality that is not looking ahead to the next seven months. I feel like it should all be done. Esther has already endured so much treatment. Her body, destroyed by chemo, is being sustained by other people's blood and an IV with liquid nutrition each night. Shouldn't this all be done? Can't our family be together?
I see the frailty of Esther's body, and I am beginning to see it in the hearts of my other kids. This chaos, time away from us, from me, is leaving them threadbare. The last few times I've seen the kids have been heart wrenching for a mother. To have them cry, honestly, that they don't want to leave me, that they miss me is horrible. Pray for them, for Rourke, Lydia, Frannie, and Zinnia. Pray their hearts would remain soft and tender, gentle, compassionate and that we'd give the time they need to rest in our love, rather than hurt them by choosing to find security in what we can control.

We are working out a plan to be able to spend more time with them over the next 6 weeks. Beginning January 22nd, Esther will have radiation five days a week for a total of 20 treatments. Because there were some calcified lymph nodes on her pre-transplant scans, she will need more than the original 12 treatments we were expecting. Her radiation doctor, Dr. Lui, said that in those cases there can be microscopic cells that are not detectable until they've grown and become a life eating tumor. With a cancer as aggressive as neuroblastoma, it is never wise to err on the lighter side treatment.
So, we move forward. Esther will remain at Brent's Place because she needs to be near for her daily radiation and frequent clinic visits and transfusions. Due to the need for her to lie perfectly still, she will be sedated for each early morning treatment. We will share the time in Denver and as of now, siblings are allowed in the clinic, so we'll have a variety of siblings there with us.
Esther is doing well. It is a joy to see her running on her tip goes and laughing with her brother and sisters. She is, and will be, incredibly vulnerable to illness. The pressure of staying healthy keeps me up at night. I want to lock our family in a bubble. The thought of illness robbing us of further time together is more than I can handle. Pray for health, my worry will not help one bit. I might start wearing a mask in public. You never know what you might encounter, like the creepy guy at Walgreens who hit on me and then tried to give me a hug. I practically shrieked, "Don't touch me," but it was because I was more afraid of what germs he was carrying than the fact he had just put his arm around me. I will confess I took a bit of satisfaction in telling him my pill crusher and gloves were to take care of my daughter with cancer, not "for my nursing friends." <insert shudder>.
Anthony, Rourke, and Esther are at Brent's place for a few days. The girls and I get to spend the weekend at home with Aunt Teresa and Aunt Margarita. Pray for rest and a bit of recovery for all of us. Tonight will be the first night in my own bed in 28 nights and it's calling.

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You Are My Sunshine

You are my sunshine

My only sunshine

You make me happy

When skies are grey

You'll never know dear

How much I love you

Please don't take my sunshine away

 

This was Esther's serenade today by some of her nurses, complete with a Strawberry Shortcake cake decorated by the CA, Jenny. I think this little lullaby will be one of the most memorable moments of my life. Esther has been a joy, even through the darkest days, she brings sunshine. She has been well loved and so have we.

Today was so incredibly full of emotion. I was fighting tears the entire day. Thankfulness for God's kindness to carry Esther so graciously through this horrible trial. Awe of the beauty of her strength and bravery. Love for the kind nurses and doctors who have cared for Esther. Fear that she may not really be healthy enough to leave. Sobered by the last four weeks, this has been a big deal. I can't really describe the mix of my emotions, but I was incredibly scattered.

First thing this morning a few of the night nurses came to say goodbye. Anthony has written that they love me, but I actually think I might love them more!

 

As the day went on other various doctors and nurses came by to congratulate Esther on her journey.

There are so many that I didn't get to take pictures of. We'll get to see them again, but for the last four weeks, these are the people who have seen the most intimate parts of this journey. We are blessed, if only thank you was enough.

.

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Today?

So far everything looks more than likely on track for discharge today. The question mark is that she's having a hard time keeping one of her meds down, it just keeps coming back up. The EKG people never made it up yesterday, so I think we're doing that today. Her heart rate has been lower. Also, the diarrhea has not cultured anything, so I think we're on the right track.

I think we'll see if she can take a capsule version of the medicine today. Her night nurse said that some kids just can't tolerate the oral version of the medicine because it has aspartame in it's flavoring. We'll see....

 

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Hopefully Tuesday

Esther has been doing really well! She's transitioned all of her meds to oral and today was the last day of her pain pump. She still has a narcotic ordered if she needs it, but things are looking good.

For the last two days Esther's heart has been racing, in the 150s-160s even when she's resting. The doctors would like to do an EKG tomorrow to make sure nothing is overlooked with her heart. Tonight it was down in the 130s, so that's better.

The other thing that might hold us here is some diarrhea. That is one of the "call the clinic right away" things on our discharge list, so I'm guessing it could keep her here a couple more days just to rule out any infections. We'll see, no one has requested a sample and she's not on isolation precautions, so that's good.

We've been passing the time the last couple of days with fun things. Yesterday was musical nurses, with 4 nurses. It's a good thing we love our nurses. She was able to even have Miss Rebecca for part of the day. That part included me not setting my mom up for success very well and leaving her with a TIRED, GRUMPY girl at bath time. Whoops!

All in all, it's been great. She had her Mr. Ricardo today, so all was sunny and bright. Here's some ways we've been making hospital living fun....

Walks! It is very uncommon for transplant patients to not be on isolation precautions (this means when anyone enters the room they have to wear a gown/and or mask and if I leave, I have to do the same. Since she's not on isolation, she can walk. The new unit is great! It's much bigger than the old BMT unit which was a small horse shoe. This is more like a normal floor and she can do laps. Her legs are pretty weak and wobbly, so it's good to get out and exercise. We've come to an agreement that if she walks a lap, I'll let her ride a lap in the stroller. Ricardo called it her victory lap.

Puzzles, puzzles, puzzles.

I've been trying to portion out her food in these little tea cups and plates. She really can only stomach a few bites of anything and texture is not her friend.

The new tray goes HIGH. Probably 4 1/2 feet high, so we took advantage of a blanket fort opportunity!

Under the tent we played with her fun stacking flowers, read about adventures to find the North Pole in the hundred acre woods, and played tricks on Mr. Ricardo. Esther was convinced he would never find her under her tent.

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Party on a Friday Night!

Daddy got to spend the day with Esther, and I was able to be with the kids. Anthony and the kids have returned to Fort Collins for a few days. When Esther is discharged she will return to Brent's Place for a month or so, I am guessing we will all be able to be together in Fort Collins following her radiation, hopefully by mid February.

Esther's continued trend of being a night owl was embraced, it is Friday night after all. Her request to accompany her movie, Tangled, was ice chips. We all know how much I enjoy a nice, soft piece of ice.

She'll probably need platelets in the night, but she didn't get them yesterday. YAY!

I just tallied up her various procedures, infusions, etc. for the Beads of Courage program. I haven't turned in a sheet since the last time I wrote about this. This is all of her beads from the beginning of this journey. Some of these, like pokes and fevers are probably a bit under the mark, but this what I could recall going back through the blog. I'm glad for a chronicle of this journey. God has done so much, carrying Esther (and us) through....

• 1 biopsy revealing Stage 4, High Risk, Neuroblastoma
• 2 Bone Marrow Aspirates
• 32 days with a chemo treatment (2-3 drugs/day including two 72 hour infusions, two 96 hour infusions, all combining 10 different chemo drugs)
• 2 immunizations (a flu shot and the booster)
• 3 line placements (1 port, 1 PICC line, and 1 broviac)
• 11 (roughly) clinic visits...she was inpatient so frequently we didn't often make it to the clinic.
• 5 visits to the ER (all on a Sunday night)
• 1 ambulance ride
• 49 days of fever or neutropenia
• 64 days of pain medicine and/or IV antibiotics
• 58 pokes (shots, port access, blood draws, IV starts)
• 32 tests/scans
• 36 blood and/or platelet transfusions
• 1 tube insert (the foley with her surgery)
• 95 inpatient days
• 27 days of IV nutrition (TPN)
• 3 stem cell harvests
• 1 surgery to remove her tumor
• 1 adrenal gland removed
• 1 transfer to the PICU
• 1 stem cell transplant

 

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Moving Day

Today was moving day for the BMT unit. We packed up all of our belongings into "belonging bags" and headed due east a hundred yards or so to our new room on Seven East.

As with all moving days, little things are missed, like trash cans and pillows. Overall, the move went smoothly. The poor IT guy had several grumpy teenagers whose TVs don't work. He was very nice, but I felt bad for him.

As long as Esther's been visiting Children's they've been telling us about the "new tower." Things are pretty much the same, but fresh and clean. The biggest improvement being Esther's direct caregivers can use the bathroom in the room!!! In the old BMT unit only the patients were allowed to use the bathroom...this meant parents of 10ish kids with all kinds of whacky infections were sharing the same bathroom. I think this was a smart upgrade. The biggest downgrade, a bed for adults that about 2/3 the size of a twin but well over three feet from the ground. It is only a tiny bit wider than a standard pillow...I hope I don't fall off. Good think they don't let two parents stay in the BMT unit, one would be sleeping on the floor.

It's nice to be in this new room and Esther was so excited to be the first person ever to take a bath in her new room and if she decides to go to sleep, the first person to sleep in her new room. For the last five nights she's decided sleep is overrated and chit chatting is more fun and hasn't been falling asleep until after 11 or midnight. Pray she'd sleep!

Esther is recovering very well! Her mouth is healing and we've been decreasing her pain meds about 10% every twelve hours. Yesterday she didn't need a platelet transfusion! She did get one early this morning, but going a full 24 hours between infusions is definitely the right direction.

AND....the BIGGEST NEWS....IS.....as long as everything goes well with no fevers, weaning her morphine, and continued platelet production, that stroller will be carrying a little girl out of this hospital on Monday! YIPEE!

 

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Starting To Feel Better

Esther's ANC is over 3000 today. She is getting a medicine that encourages her body to produce white blood cells, so it's coming up fast. In the next couple of days we will stop this medicine to see how capable her body is of making white cells on it's own. Her counts will likely dip again with out the growth factor, but not drastically low.

We also lowered the continual rate on her pain pump and she did great. She still has a button to push as needed, but this is another step toward recovery. The sores in her mouth are getting better and she even had a few bites of a blue slushy! It came right back up, but I was proud of her for trying. She's also swallowing her oral medicines easier. Good progress!

Another platelet transfusion today, this will be the real hurdle to dishcharge. Thanks to everyone who has donated or spread the word, yesterday the donor center was full. I'm sure that was a refreshing change for the blood bank and made a difference even this morning as Esther's platelet transfusion didn't need special approval. Keep up the good work! If you're not in Colorado, Taylor can use them for her upcoming stem cell transplant in Kansas City, Andy can use them in Portland, OR, and Boden, Collin, and Jenna can use them here. These are a few of the families we've met along this journey. They are all in different stages of their treatment, but all have needed transfusions at one point or another. It's neat to see the platelets come up as I wonder who has been the life saver today. I pray for and praise God for each donor as I see life dripping down into Esther's body.

We can not tell you how thankful we are all for all of your continued prayer and support. Here's some smiles from our day.

This is what she thinks about this after bath hospital perk....

 

 

 

FaceTime with the crazies...

Looking at the Christmas lights. I'm guessing they will take them down tomorrow, so we had to get one last view. They are images from the 12 Days of Christmas, from our window she can see 11 Pipers Piping, 10 Lords a Leaping, 9 Ladies Dancing and 7 Swans a Swimming. I wish she could leave the room to see the rest of the days. Maybe next year we'll be here for a check up, and she can see them then.

These are Esther's IV meds for tonight. Whew...that's a big plate of meds. She has to be taking most of these orally before discharge. We are so thankful she's a good medicine taker!

 

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