Monday, July 27, 2015

Hester Family Food Network....

So, we were sort of stuck indoors-not just with Elijah's low counts, but I was pretty sick. Laid up on the couch, the best thing I could come up with was to watch a few episodes of Food Network Star.  (Disclaimer: that show is full of totally inappropriate stuff).

The kids, however, loved it and in the days to come could be found playing their own version in Ev's play kitchen. It was hilarious to hear them mimic the show with such detail.

Well, being stuck inside is just never fun.  I decided one day that we would have our own "Food Network" night.  The three big kids were the chefs, the two younger boys were judges along with Ben and I.  We had to work things a little differently to make it practical.  
Noah had the appetizer:
Toasted baguette with goat cheese, (chopped jicama), shaved melon, sliced almonds toasted with paprika, and (fresh parsley).

Caleb had the entree:
Farfalle pasta in a homemade Alfredo sauce with caramelized onions, broccoli, (sautéed mushrooms), (marinated artichoke hearts), grilled chicken, and topped with fresh parsley.

And Emma had dessert:
Lemon-lime bars with (caramel)-(whipped topping).

The whole experience was great! It taught the kids how much work goes into whatever you put on a plate...and how important it is to hear *kind words* in response to your dish.
Ezra worked with me on "curveball" ingredients-the ones in parentheses up above.  Now in the TV show, the contestants are all about sabatoge.  But Ezra and I worked hard to pick ingredients that showed them we believed in their ability to succeed!!!!

Each cook received their curveball ingredients just before they began cooking.  They had to incorporate them "on the fly". 
Each cook also had to film an introduction and a 30 second presentation of their dish.  They were judged based on taste, level of difficulty, food presentation, presentation of the dish, and their use of the curveball ingredients.

And the winner.....
Emma!  She took the win because she did all the work on her own.  Her presentation of her dish was personable and fun.  And it tasted great!

But we were BLOWN AWAY by all three dishes and marveled at our gourmet meal. Not to mention their great job on clean-up.

So Caleb took the award for most complicated dish.  His had the most components by far, and it tasted amazing.  Ben helped him with the barbecue chicken. We were especially surprised that Judge Ben Hester even enjoyed the caramelized onions!!!

And Noah!  He took the award for most beautiful food presentation.  It blew us away that he produced something like this at 8 years old.  I helped him with getting the skin off the jicama and the melon. And his dish was the two younger boys' favorite. 

Their prize? They each got to pick a kindle book, and Emma also received $5 to Starbucks. All in all, it was a night of great fun, great food, and great memories.  I'm hoping to combine all the video into a short episode for our family to watch together.

Or, maybe that would be another great project for them??? :-)

On feeling left out....

Even as adults, we all know how painful it is to be left out. And in this day and age, social media provides a constant reminder with images of all the things people are doing without you.  

But as a parent, it is even more painful to watch it happen to your kids. This past weekend was junior high camp at our church. Emma had opted not to go last year, and wanted to wait until this year when her brother would be going as well (how can I possibly have TWO middle-schoolers?).  They were all set to go when we learned about Elijah's reaction to the chemo and his very low white cell count.  It was so hard to say "no" to them in this case....but there was more going on than just those two going to camp.  There was a baby boy with no immune system, that needed protection.

Perhaps even more devastating for Emma is that this week is Vacation Bible School at church.  She has been looking forward all year to helping.  She is so gifted with children and loves being a part of this wonderful week...but again, it isn't just about her, and her gifts. 

I never just sit around thinking of ways to say no to my kids. In fact, I have the greatest joy and pleasure in getting to say "yes!!!"  But sometimes, there is more going on than what they can see.

Emma and Caleb-I just want you to hear my heart towards you.  I SEE the sacrifices you are making on behalf of your brother.  I SEE how hard it is to feel left out and left behind, and to feel like the world is going on without you.

And even more personally-I KNOW what it feels like to be left out. I have been the only one, when everyone else is going a different way. And while it doesn't make it any easier for you, I hope it encourages you that you're not alone. And I am with you-I'm not upset with you when it is hard.  I hope I am sympathetic. :)

In my loneliest times, I have found Jesus to be a High Priest who sympathizes with me. He knows what it is to stand alone.  He sees every hardship and every sacrifice. And He is always worth it.

And even more than that, He redeems it. You may never know the "other things" that went into the sacrifices you make...but one day, you will.

So keep on. Don't grow weary of doing what is the proper time, you will reap a harvest of righteousness and peace.  And the "no" you hear today isn't to hurt you or keep anything good from you.... It is for the good of many...and I pray that it only gives way to greater "yes-es" to come.  I love you both.
(Emma and I on the pier in SB. My sweet walking buddy).
(Caleb and the Perplexus Epic.  I'm sure you will conquer it any day now.) 

Sunday, July 26, 2015

6 Months....

Elijah Seth,
     It is so hard to believe that 6 months have gone by since you came and turned our world upside down.  From the moment you arrived, you have been SO loved.  I don't think any of the kids can resist saying your name, stopping to talk to you, or calling you by one of your many nicknames every time they pass by you.  Even Evelyn was saying in the car "I love you, Lijah."
     Elijah is a big name.  The Old Testament prophet was known as a "seer", or one who could *see* into the things of heaven. He was a bold and lion-hearted man who knew what it was to stand alone with hundreds against him. He knew the highs of victory and the lows of fear and discouragement.  But more than any of that....he knew the faithful provision of a great and mighty God.  And this is what we pray for you.
     In 6 months, you have caused us to see, I mean REALLY see, beyond the veil that Christ tore in two by his death on the cross. You have reminded us, boldly, that there is a brighter and more beautiful land where death, and sorrow, and cancer don't have the last word.  
     You have been the link to join us to so many, who never would have given a second thought about a crazy huge family in California.  But cancer does that.  It is a tidal wave of destruction, taking eyes, hearts, and lives in its wake.  It is also a link...a unifier...a leveler of fields, so to speak.  Rarely is there a person who has not been touched in some way by this destroyer.  Your cancer reminds us of the Great Cancer, sin. It seems harmless at times, but unleashes a destructive power carrying on for generations.  But it doesn't have the last word.  
     You remind us, with every smile, every giggle, every twinkle of your remaining eye...that we have a RESCUER.  And not a far-off, distant, floating in the sky kind of rescuer.  We have an ADVOCATE.  That word never meant to me what it does now. After countless phone calls, endless paper work, and attempting to coordinate multiple doctors on different sides of the is so clear to me that I need an advocate-someone who will move heaven and earth on my behalf and communicate truth and see what I don't see.  And I have one. THE ONE.
     And so, Elijah....appointed by God, (as your name means) 6 months you have already known more of fear than I would have wanted for you.  But you have also known such victory, such hope, such LOVE.  I have seen your story inspire courage, bravery, compassion and kindness.  I hope it is because behind all these fragile jars of clay is a power that is all-surpassing.  I will tell you honestly that I don't always feel it.  Sometimes I find myself discouraged and lonely and depressed, like the prophet Elijah before you.  But that's what made His story truly great. His story was of the all-surpassing One.  God SAW Him.  God even sent ravens to feed Elijah in the moments of sadness.  And so Elijah....we have prayed over you, that where your sight has been taken from you by this destroyer called Cancer, it would be restored 100 fold with spiritual sight and the ability to see into the things of heaven.  That we, as a family, would begin to really live by the principle that there is always more going on than what we can see in the natural, physical world.
     But even more than that, we pray that you would always be aware of the God who SEES you. Whether in your moments of victory or discouragement, He sees you.  He knows you. He loves you.  His plans for you in 6 months of life have blown me away.  And they aren't finished!!  We are so thankful for every second with you.  May you stand faithfully with the God who sees you, upheld by His provision.
Happy 6 months, my amazing boy. (Who wears 12-18 months, and tried rice cereal for the first time last night.)

Thursday, July 23, 2015

More information...

I totally forgot that this whole thing is like learning a brand new language.

So, neutropenia is a condition in which your number of neutrophils (a type of white blood cell) drops below 1,000.  Below 500, the normal bacteria in your stomach and mouth can make you sick.

Neutropenia happens with systemic chemo often. But with his treatment, the intra-arterial chemo, it only happens about 11% of the time.

The biggest thing is that...the longer his counts are down, the higher his risk of infection/fever, and the longer his normal  treatment for cancer is delayed. They can't do an exam or anything until his counts are up. If his counts are still low next week, they will give him medicine to help make more white blood cells...but right now they are hoping his body can recover on his own.

Wednesday, July 22, 2015

The Land of Neutropenia....

Well. Elijah's counts were lower today than they were last week.  It just means we need to be extra careful, and we test again next week. It also means that our next trip to NY may be delayed because they can't do any exams or treatment until his counts are back up.
Which is okay, because I don't have a flight, or a place to stay, or childcare figured out....
One. Day. At. A. Time.
We are super thankful that despite having such low counts, and having some colds in the house, Elijah has remained well and without any fever. (Fever means ER).

I was so worn out on Monday, I just wasn't up to "normal" school. I assigned the kids a presentation on blood, in teams.  I figured we might as well learn about where life has us.  They did such a great job! It was interesting, amazing, and I was so impressed with how much they learned.
"The Circulatory Laboratry"
Showing the ventricles of the heart, and where the blood is oxygenated.
"An Army in Your Blood"
Showing red blood cells, white blood cells, plasma, and platelets.

Thursday, July 16, 2015

Don't Be Surprised...

(I know everyone is anxious for an update on Elijah....I promise, it's in here!!)

Recently, I was given the opportunity to share with the women's leadership team at our church. When they had asked me, I immediately had these verses come to mind:

12 Dear friends, don’t be surprised at the fiery trials you are going through, as if something strange were happening to you. 13 Instead, be very glad—for these trials make you partners with Christ in his suffering, so that you will have the wonderful joy of seeing his glory when it is revealed to all the world. 19 So if you are suffering in a manner that pleases God, keep on doing what is right, and trust your lives to the God who created you, for he will never fail you.

I keep finding myself....surprised.  As if somewhere down inside of me, I was believing that because Elijah has cancer, that we wouldn't have the same normal stuff like root canals, or sickness, or car trouble.  But these verses were a good reminder for keeps going! I need to adjust my expectations a bit....and not be quite so surprised.

Our van is in the shop getting fixed, and fortunately Ben had Wednesday and Thursday off since he is scheduled to work the weekend.  He was going to stay home with the kids while I took Elijah down to CHLA.  Four of the kids are stuffed up, two of them are coughing, and I hadn't been feeling well either.  About an hour or so before I left for CHLA, it hit me. I was sick. I wasn't sure I could do it all by myself.

My mom was so kind to step in last minute and watch the kids for us. Ben and I drove her car down to LA. When we arrived at the hospital, Elijah's prosthetic had turned kinda funny, so his "eye" was pointed downward.  After several tries, I finally got it reoriented. 
Off to his blood draw.  She did a great job-she got it on the first poke.

Our appointment with the oncologist was at 4pm, so we had time to grab a bite to eat at the hospital while we waited. Unfortunately, I still wasn't feeling well, so I couldn't eat much. We finally decided to check in for our appointment at about 3:30pm.

They were running behind, so we weren't seen until about 5pm or so. (Waiting is so much easier when you have a friend with you!)

Elijah is neutropenic. That means that his counts are pretty low. And it also means we have to be very, very careful. Any fever would mean going to the hospital right away.
As we knew, his genetic testing results confirm the germline mutation, so he will need an MRI every 6 months to make sure no tumors develop in the brain.
They will repeat the blood draw next week to make sure his counts are going up.

We headed home and were anxious to see all the kids. About 5 miles from my mom's.....we got a flat tire.
Ben got right to work changing it out (my hero!!!!), but then we discovered that the spare was low on air also. We made it to the gas station, put money in the machine....but no air. The gas station attendant worked on trying to figure out the problem for a few minutes before finally allowing us to use their main compressor in the back.

We got the kids and got everyone back home and in bed.

Today was long...and unexpected. But by God's grace...we were not surprised. We were able to have a really good laugh together about the tire fiasco. And we were able to be thankful. Because my mom was willing to watch the kids, Ben was able to be at a very important appointment with me, and even though I didn't feel well, it gave Ben and I some much needed opportunities to chat and hang out together. He's my best friend!! And he sure can change a tire! :)

Thursday, July 09, 2015

These two...

Ah! Taller than my bookcase!!!
Teacher Caleb

Today was a harder know, you just wake up more tired and weary and worn. 
Both Emma and Caleb are just amazing people, so today I have to brag on them just a minute.
They started a habit of "teaching" the younger kids while we were gone. Emma decides on a topic, Caleb handles teaching, and then Emma comes up with an activity or snack that goes along with it.
This past week they learned about coordinate planes (AKA Cartesian coordinates), and they made a human coordinate plane, along with tests and everything!
I am literally amazed by these two. All of them, really! They are having fun learning, and I'm super blessed and encouraged on a day where I needed it.
Today, there are tackling Geography, including magma and the earth's crust/core etc.
Emma's special snack included yogurt, granola, and crushed graham cracker.

The boys have requested a second teaching time for this afternoon on mechanics-including gears, pulleys, and levers. Evidently I'm in charge of the activity so I better get to work!

Tuesday, July 07, 2015

Home Sweet Home

It was a long day-and I'd be lying if I didn't admit there were times I felt like we just could not do it. Delayed flights, poop explosions, and going without food....
But oh man! Coming down the escalator and catching a glimpse of my man's Vans....
We finally made it home and I am so thankful to be back with my crew.
Now we need to try and figure out what the next few months of treatments will look like for our family.