Story Time with Esther & A New Duct Tape

Last summer a friend of my aunt's gave Esther a knitted purple hippo and a book, "The Hiccupotamus."  This book is hilarious and has begun a funny habit. Esther "hics" all the time. Today as she was drifting off to her propofol induced sleep for her MIBG scan she was pretend hiccupping and then giggling at herself. This girl is a CRACK UP!

Well...she asks to read this book almost every night. She's even delighted our friends at Brent's Place with a new activity, "Storytime with Esther."

Monday evening she asked Miss Rachel to read the book.

A few minutes later, Mr. Allen had his turn.

Today she read it with Miss Bridget.
Look at that giggle!

She had a captive audience, hence the new activity, "Story Time with Esther." 

In an effort to see the mercies around me...here's a few more fun discoveries over the last few days...

A princess on the red carpet with soft, fuzzy hair.
There was going to be an Oscar party at Brent's Place,
but because of the snow storm it was canceled.
Frannie, Lydia & Zinnia were here and Anthony came to
pick them up early to avoid the Sunday storm.
Zinnia said they had to leave because a "lizard" was coming.
We've always known Zinnia's a comedian.

Meals at Brent's Place are such a gift.
BBQ is just an complete unmerited bonus.

Now about that duct tape.  Yesterday when we were at the hospital there was all kinds of fun things to see in the parking garage and that's when it happened...  

This is neither our car nor my driving skills.  Only those experience with applying this water barrier over central lines and other dressings that can't get wet during a shower or bath will fully appreciate this new duct tape.  Next time you get a hole in your tail light or window, find a nurse and ask for some aquagaurd. 

Finally...for all of you educators...here's an example of "lizard" aerodynamics in a parking garage.  

I wish I could've seen these drifts forming. It makes me
want to know more about the aerodynamics of this car.
Okay...I'm a nerd, it's okay...snort.

No Kidding

Anthony shared this on twitter a few days ago. As the words entered my mind, my heart quickened and a dry "no kidding" came out of my lips.

Some days navigating this life is just normal (whatever that means). It's our day and I go about it, try to be faithful in the tasks for that day, and just live. Other days I am completely broken. Broken apart. Recently there have been a lot more of those broken apart days.

Now that Esther's transplant is complete, we are past the outwardly, most ugly portion of this wreck. The last 8 months have certainly brought brokenness, and the last several weeks have revealed the "apart." Pieces are everywhere. Our family, our home, our marriage, school, everything just feels out of sorts.  

While Esther will be back at home in less than two weeks.  I want to look forward to a happy reunion and that everything will just be all over, but the truth is that there is more work ahead, a lot more.  It will take time and a lot of effort for the pieces to evolve into a recreated, unified life.  I'm just too tired.  

A friend described to me feeling like she just wanted to curl up in her bed while dealing with her own child's cancer, the needs of the rest of her family, and just living in general. I am at that point and feel so fragile. Over the last several days even small tasks have felt like too much. I am so, indescribably, tired.  Weary.

"God shields us from most of the things we fear, but when He chooses not to shield us, He unfailingly allots grace in the measure needed. It is for us to choose to receive or refuse it. Our joy or our misery will depend on that choice."  Elizabeth Elliot, Secure in the Everlasting Arms

I have been flipping around in this book the last several weeks. I have been living in misery these last few weeks, my joy has depended upon this choice: to refuse or receive the grace I need. I think I've been refusing the grace. How quickly we forget the mercies showered over us.

"To re-read a journal that one wrote decades ago is a surprisingly faith-strengthening experience. There amid all the exigencies and vicissitudes of life, one can trace the unbroken thread of the utter faithfulness of God--the measure of grace to help in time of need, unexpected kindness and help of many whom one knew, the physical strength needed to do what needed to be done, the spiritual renewal that came from the Father's continual pouring out of those mercies which He promised "endure forever," great mercies, and also some so small, so heartbreakingly sweet...." Elizabeth Elliot, Secure in the Everlasting Arms

I have re-read many of the blog posts we, and other families we know, shared a cancer journey. The thread of an utterly faithful God screams out, as does the misery of my choosing to dwell in what is hard or not going my way.  

I want to choose differently; to strive to see, and hold onto, the mercies.  God did not choose to shield us from Esther's diagnosis of cancer.  We have not been shielded from the shrapnel of a life uprooted.   Now there is a choice, I can continue to refuse promised grace and live in misery or to receive it and once again find joy in the midst of this suffering.  

Esther is two days into a long week of scans and test.  Monday she had a bone marrow aspirate and biopsy.  She is pretty sore still...the procedure required a needle to be stuck into your pelvis.  The aspirate is to retrieve the liquid marrow (it looks just like blood) and the biopsy draws out a mechanical pencil sized portion of the solid core.  She was sedated for the procedure and handled it well.  Her attending oncologist, Dr. Garrington, was the one to do the procedure.  She was very excited to see him.  He asked her about her radiation oncologist, Dr. Lui, and if she liked him.  She smiled, pointed to him, and then said, "I like you."    

The kindness of the caregivers in our path are a mercy I hope to never forget or overlook.  As much as our friends and family has held us up along this weary road, they have loved and cared for Esther well.  I can't imagine better doctors, nurses, and caregivers from Brent's Place.  

Esther drinking her CT scan contrast.  She did great
despite the volume being nearly double what she's
had to drink in the past. 

Tuesday Esther had a CT scan, a pulmonary function test, an EKG and  Echo cardiogram (heart functioning), and an injection for an MIBG scan Wednesday.  On Thursday she has an appointment with the audiologist where we will see if the transplant chemo did any further damage to her hearing.

Please hold us up, pray for us.  Please hold up our family, our transition back to home.  Pray that I would not refuse the grace He has promised to me and that I would actively search for and see the mercies strewn about my life. 

Please pray for Esther's scans to result in good news.  Pray for her to never relapse.  Pray for her complete healing and that her body will not sustain any further damage from the rest of her treatment.

The Troche

The troche is a step in Esther's mouth care. It is a lozenge that can be sucked on, but Esther just chews it up. So...we crush it, dissolve it in some water, and then she swishes it her mouth. She has quite the swish.

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I like strikethrough

Radiation

Radiation

The second one looks a lot better! Strikethrough is a good thing.

This morning held a beautiful greeting for a day to celebrate.  I filled out a survey about our experience in the radiation oncology department.  One of the questions was "What was the BEST part of your experience in the radiation oncology department?"  I wanted to write, "The sunrises."

If only a photo could depict the beauty of a sunrise.

She's still sleepy from the anesthesia, but was certain her hand print would be pink.

Her fingers moved a bit and made hearts. 

Could she be any more stunning?
 Look at that shadow from her hair!

Man, she is so cute and is gaining weight!
Almost a full kilo from last week!  

Lashes and Brows, Boxes and Cows

Lashes and Brows

Look at these eyelashes and brows!  Esther's hair is starting to grow back, it's very soft on her head.  Her eyes have just come alive with the addition of eyelashes any girl would love to have.

Look at those sparkly eyes! 

Do you see my fuzzy hair?

Esther only has 2 more radiation treatments, Friday morning and next Tuesday morning.  At the radiation oncology clinic whenever anyone fininshes their treatment they get a few goodies and a little celebration for thier graduation day.  At 7:30 in the morning, people aren't too celebratory, so several times it's just me and Mr. Bill, the front desk attendant, cheering.  I've heard afternoon graduations are more lively.  On her graduation day she gets to paint a her hand print on the wall with the other, many, kids who have completed radiation.

Three Weeks!

We will be checking out of Brent's place in about 3 weeks!  We had originally thought we'd be heading home following her final day of radiation, but given that we're having new carpet installed tomorrow and the next phase of treatment is coming so fast, we've decided to not add extra stress.  Moving everything back into the basement, finishing our LONG cleaning list to make the home safe for Esther to live, and moving/cleaning our apartment at Brent's Place all in a few days felt very overwhelming.  So, following Esther's first week of antibody therapy, we'll be heading home.  We may organize a few visits for Esther to come home, but it depends on the environment of the house following new carpet and we have to finish that cleaning list.

We have a busy couple weeks following Esther's last day of radiation, February 19th.  The following week, of the 25th, she has a we3ek of scans and other tests to gain a baseline for this portion of her treatment.  This will include another bone marrow aspirate, MIBG scan, CT scan, heart and pulmonary function tests, and hearing tests.  Then the first week of March Esther will check into the hospital for 5 days for her first antibody therapy treatment.  We learned more about the therapy today and Esther's pretty excited about the side effect that makes your hair grow really fast.

Boxes and Cows
A great crew of people from our school group and from Anthony's office came last night and made quick work of the boxes and tearing out the carpet.  New, non-nasty, carpet will be installed Friday.  

Only a group of engineers could figure out how to fit a bedroom, office, living/play area, a gazillion books & school room into a one car garage. They also spent time discussing where the floor drain actually drained...into the creek or into the normal drain system.  Anthony's office does a lot of work with water, I would've never thought about were the floor drain went.  When Anthony sent me the picture I was more concerned with how gross it looked and wondered if we could clean it somehow...

Empty basement, hard workers!

Saturday, beginning around 9am, there will be few large boxes of doughnuts up for anyone who can come help me get all our stuff from the garage back into the basement.  Will you please send us an email if you can help for a little while.

Cows?!   Cows?!  Well, not really, but I guess there was a lot of dairy consumed on Valentine's day, so maybe cows.  It makes for a catchy title, right?!

Esther was pretty excited about Valentine's day.  Wednesday night the girls all got in the spirit by helping make heart shaped pizzas, complete with heart shaped pepperoni, for dinner at Brent's Place.  The volunteers who come in to prepare meals are such a gift.

Today she gave little Valentine cards to her nurses, doctors & other hospital staff.   She was SO excited to give them out.  She is missing her inpatient nurses, and we had a three extra cards.  I was wishing I bought more because she kept naming them off.  Of course she put extra hearts on Mr. Ricardo's Valentine.  Tonight she prayed she wouldn't have to stay at the hospital again, but I think she'll be consoled by getting to see these caregivers we so love!

At Brent's Place professional chefs came and cooked a delightful, sit down, candlelit meal.  We got a heads up to the coming festivities, so we were sure to pack appropriate dresses and new HIGH HEELS and glittery shoes were the perfect touch.  I remember in Kindergarten I switched shoes with a girl in my class who had high heels.  My mom made us trade back, I was so sad.  Really, my shoes were nasty and hers were pretty and high heeled, my mom did the right thing, but for our girls, high heels all around!

Back in Ft. Collins the Alvarado men let Zinnia choose their dinner location.  She choose Old Chicago's.  I think they all enjoyed it and she was excited about her own new, sparkly shoes.    Anthony posted this on Twitter tonight, "Valentine's Day at home apart from @samalvarado. Die Hard commencing."  

He sent delicious chocolate covered strawberries...flowers aren't allowed around BMT patients, so there are none at Brent's Place.  I think I like the strawberries better!

Kids with cancer falling off the cliff....

So last night I wrote a really long post.  Then my pictures wouldn't upload.  Then I got cranky.  Then I realized all I did was complain.  So then I went to bed.

In sum, I know we will get through all of this, but right now it's just hard, wearisome.  There is very little time for rest, and it's been difficult for Anthony and I to just pass the baton as we trade places. We've spent three nights since Esther's transplant admission in the same location and to be honest, we both suck at the phone.  It's difficult for us to connect and be unified this way.  I guess when we get to be home together we'll have to take some extra time to date each other.

This morning Esther had her 16th radiation treatment, only 4 more to go!  Thank you for continually lifting up her health.  She has remained healthy even though some of our other kids were sick and she has handled radiation very well.  The only hiccup has been a need to increase her anesthesia because she was reporting being aware of her surroundings when she was supposed to be knocked out.

We are gearing up for Esther to come home!  Preparing a home for a post-transplant child is quite the task.  It seems like everything is dangerous for Esther, but mold and mildew are particularly harmful and even a tiny bit can make her very sick.  Keeping this in mind, the fact that the previous owners of our home had fish tanks and a water bed in the basement, our water heater flooded a couple years ago, and that every time we've cleaned our carpets it's stunk for days, we felt it would be better to put in new carpet rather than do the deep cleaning.

Boxes are just as much fun
for 4, 6 & 8 year olds
as they are for one-year-olds!  

For most of the last week I was home packing up the basement and a crew is coming over Wednesday evening to move everything to the garage and tear out the carpet.  New carpet will be installed Friday or Saturday.  I think they are set on help for Wednesday, but we will probably need some more help moving things back into the basement after the carpet is installed.

Esther is progressing quickly and is moving onto the final 6 month phase of her treatment, antibody therapy. This portion of her treatment will help her body fight future cancer; this is so important because the relapse rate for neuroblastoma is so high. The study behind this therapy was BIG in the cancer world.  60% of the kids on the therapy had positive results verses only 40% of the kids not on the therapy.  The results were so positive that the study was stopped because it was unethical to deny all the children the benefits of the therapy.  This article from the Children's Oncology Group talks about the therapy and  says: 

John Maris, M.D., COG Neuroblastoma Disease Committee Chair, responds, “This is the first clinical trial to show a substantive increase in cure rate in well over a decade for this highly malignant childhood cancer”.  

This is the kind of research that has brought neuroblastoma out of the relm of "many parents chose not to treat" and "virtually all kids with Esther's diagnosis relapsed."  These are REAL, ACTUAL things nurses and doctors have told us.  While neuroblastoma is still not the cancer you'd choose when looking at prognosis percentages, it has significantly improved through research.  Unfortunately, as I've written before, research is not well funded for childhood cancer.  It's not really profitable for pharmaceutical companies, and our government already only gives about 4% of the allotted cancer research money to kids.

One of the things about neuroblastoma is that when relapse occurs, treatment options are scarce, mostly limited to research.  Research that developed this significant improvement in the first time success of neuroblastoma treatment is in danger due to the upcoming federal budget cuts.  This article from St. Baldricks says:

Unless Congress acts by the March 1, 2013, a series of automatic, across-the-board budget cuts (known as sequester cuts) go into effect.  These spending cuts, which cover a wide range of government programs, are a result of failed efforts to trim $1.2 trillion from the 2011 budget. 

The budget cuts of greatest significance to childhood cancer are $2.4 billion in reductions from the National Institutes of Health (which funds the National Cancer Institute which in turn funds the Children’s Oncology Group - COG) and $318 million from the Food and Drug Administration, which reviews and approves new drugs and therapies for patients of all ages.  These budget cuts threaten all children with cancer, whether they are newly diagnosed, in treatment, or survivors.

Would you please take a minute and contact your members of congress and ask them to stop sequester cuts and more thoughtfully balance the budget. St. Baldricks has put together an easy way to email your members of congress, and I have a suggestion for another way.

As I thought about this...is an email really going to speak to my members of congress?  I don't know, hopefully, but maybe a phone call or a handwritten note will carry more weight.  Then I got to thinking...these men and women need to see my girl.  They need to see who they are representing when they cast their votes.

Then today I opened a letter from some friends in California who, when they learned about the poor funding of childhood cancer research, raised some money for St. Baldricks through a lemonade stand and sent over $100 in honor of Esther.  I thought about the ways kids have sold their toys, made bracelets, and sold lemonade all in support of Esther, I was so blessed.  I'm sure these are things they will remember and feel great about sacrificing for another person.

In light of all of this, I came up with an easy way for kids to support both kids with cancer AND learn about being an active citizen.  I made two coloring pages with pictures of Esther that anyone can print, color, and mail. So many kids have been praying for and cheering Esther on over the last few months and this is a way they can speak up.  I was so encouraged to hear about the lemonade stand and I'm sure it felt great for those kids to work to support their friend.

1. Down download a coloring page at the bottom of this post.  There is one with flowers and one with a wagon.  Feel free to encourage your dudes to draw their own rocket blasters on that wagon...Rourke always like to color things if they have fire :).  
2. There is a space for the kids to write the name of their Representative or Senator and a place for them to sign their name.  
3. Mail a copy to your members of congress.  You can find all the contact information for your Representatives here and your Senators here.  
4. The deadline is fast approaching, make sure they arrive by March 1st. 

P.S.  Coloring isn't just for kids...grown ups can color and mail in a picture too.  I find coloring quite calming.  

Thanks for all of your support in so many ways.  Not only have toys and lemonade been sold, our  friend, Jen, is riding in the upcoming Courage Classic with Esther as one of her tributes and stranger gave a donation in honor of Esther to, Dan, who is shaving his head for St. Baldricks.  

These may seem like small things, but thankfully we follow a God who is in the business of turning a few loaves and fishes into a meal for thousands.

Esther Wagon Coloring Pictures by slalvarado

Esther Coloring Page Flowers by slalvarado

Little Whisps and Rocket Ships

Dear Jesus,

Thank you for my cancer to go away.

Thank you for my hair to grow back.

Thank you for my eyelashes and my eyebrows.

Please keep my brother and my sisters safe.

Please help Zinnia to feel better and for Frannie to feel better and for me to not get a cold.

Thank you for mommy to not get a cold too.

Thank you for my nurses and my doctors to help me get better.

Thank you for my friends and the grown up hospital.

Thank you for Papa and Boden and Taylor to get better.

Thank you for Thomas' cancer is all gone.

Nigh, night, Jesus.

I love you, Jesus.

Amen, Jesus.

Esther's prayers are sweet, this was tonight. We've tried to teach our kids to come to the Lord with thanksgiving rather than just need. I love the way she expresses faith through gratitude and expectancy. I have learned so much about childlike faith through Esther's life and her prayers. She is faithful to pray for her care givers, friends, and other little fighters we've met along the way. Something can be learned by her prayers.

There are whisps shining in the light

Esther's eyelashes are longer than they've been since June! Her eyebrows are starting to grow back too.

She is looking healthier each day!

Once again we have been so blessed by Brent's Place! When I wrote about Rourke's birthday coming up, Allen went into action to make sure Rourke would have a cake. The same yummy, amazing, delicious bakery made Zinnia & Esther's birthday cakes, D Bar. Allen picked the perfect theme for our future astronaut and he even went the extra lightyear (since we're talking rocket ships & all) and picked it up and brought it to us on a Saturday.

8!? Happy Birthday, Big Man!

BLAST OFF!!!!

Zinnia still has a lingering cough, and Frannie is a little congested. They are getting better. Lydia has not displayed any cold symptoms but is still breaking out in hives. Rourke and Anthony have been fine. Today everyone came down for a quick lunch and birthday celebration. The kids wore masks just to be safe and we waved out Rourke's candles instead of blowing to avoid launching any germs into our bodies. We've passed this cold onto Robin's family, so prayers for quick healing for everyone would be great. Thankfully our kids actually like the taste of Kick Ass Immune, they call it "the stinky stuff" because they're getting regular doses of it and zinc.

We sang to Rourke and my favorite part is the background dancing. O how I love that little blondie!

 

 

 

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