Fun along the way

We stopped for just a few minutes in Needles, Ca. I had looked up Skate Parks and found that Tony Hawk had donated money and came to help build this skate park in Needles. It was about 114 degrees, so we didn't stay long. But we had to let Caleb give it a go for a few minutes anyway. :)

Driving into the storm

It's human nature.  Well, for most of us anyway. When you look ahead and see a storm, you want to run the other direction.

Well, maybe that's just me.

Don't get me wrong....I like watching a storm just as much as the next guy. But I like watching it from a distance. While drinking tea, and snuggling up with a blanket.

Sometimes in life, you see the storm ahead, and you want to run. Or hide. Or both.  

I'd say that Ben and I are at least a little on the adventurous side, since we did hop in a van and drive across the country with seven kids with no plan once before.

But this time, it was a little like driving further into a storm that we never fully came out of.  We're tired.  Every week since we've been back from NY, I've had to take Elijah to have his counts checked, Ben went back to work, life just keeps moving at its regular pace.  And while the adventure of a road trip with the kids still carries some excitement....getting behind the wheel and feeling yourself desperate for sleep was not something we were *anxious* to dive back into.

Not to mention....we are really pushing it. There's no time for slow moving. Last time we drove through the night twice and it still took us four days.

But Ben acknowledged early on, "This has to be Christ in me, because I don't have it in me to do this trip."

Nor do I.

I am so thankful that our God says His power is made PERFECT in our weakness.

So weaknesses laid bare...we're heading in full force.

Thanks for praying us through!

On the road....again???

Oh my.  

So, Elijah's counts have to be over 1,000 to have his exam and any further treatment.  I asked yesterday, if Elijah's counts weren't up, and he needed medication, would I need to take him to LA, or could we get the medicine in Ventura?

Then they told me....oh no, I would need to go back down to Ventura so that they could teach me how to give him INJECTIONS!!!!!

Well. Praise the Lord....Elijah's counts were up!!!! So I don't have to go down that road anyway. 

Last week his neutrophil count was at 580.  Yesterday it was 920!!!! Yay!!!!

In NY, however, they reminded me that Elijah is still borderline neutropenic. So the plan is for him to keep his Tuesday morning appointment, but they will retest counts before doing anything. 

So, with the possibility of delay still at hand, as well as possible delays with insurance....

Our family hopped in the van. Again. We have no plan. No reservations. But we have a baby boy who needs to get to New York, and a whole family of people with him and for him. 

Please pray for us.  The kids were up for this adventure....but Ben and I are a little more weary.  We had planned to be on the road by 2am (ish). And....we pulled out of the driveway at 7am.

We are worn and tired-not exactly how you want to start a trip like this.

Pray for peace, unity, and resilient spirits. Pray for endurance and perseverance.

Pray for provision and wisdom to know where to stop. Pray that we get to stop. Pray for no rodents. ;-p

Pray that somehow, we make it to NY in time.

And most of all, pray that we would love deeply, kindly, imaginatively, and well. Pray that the joy of Christ would make itself known in and through us. Pray for Hus name to be made much of.

Thank you all!!!

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 right...at 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.) 

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 country....it 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)....in 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.)

Love,

Mommy

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.

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.

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 me....life 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! :)

These two...

Ah! Taller than my bookcase!!!

Teacher Caleb

Today was a harder day...you 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!

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.

Discharged!!!

My sweet baby boy. Elijah generally wakes up from anesthesia pretty mad. He tosses his head back and forth, is restless, and seems uncomfortable. I'm thankful that I've seen this enough times to consider it "normal."

I was *anxious* to nurse him, but he just wasn't having it.  The big thing was that we needed to keep him still and his right leg straight because of the puncture to the femoral artery.

The first couple of hours were pretty difficult. I could calm him for awhile by laying in the bed with him, singing to him. He would doze in and out of restless sleep. I would try to nurse but that just made him angry.

Finally, I realized that nursing laying down just really isn't our thing.  I set up a chair with no arms, put a pillow on my lap and brought him to lay flat on my lap. He nursed right away! Just on one side, but then he was out like a light for about 40 min. Then we repeated that cycle until we hit the 5 hour mark.

Elijah is clear to fly home with me tomorrow.  Then we will be on lockdown for a bit. We will go to CHLA next week to have a blood draw, check white cell counts, and see his oncologist.

If this doesn't scare you: "if he throws up or pees on you, you need to wash your hands right away because the chemo meds will be in there." Wow! Okay.

Thank you to all who were so faithful in praying for my little guy today. We are so very thankful that this treatment exists, otherwise my baby would be doing systemic chemo right now.

The doctors and staff have been fantastic and have all been so encouraging that we really have the best doctors available taking care of Elijah.

Of course, we remind ourselves that it is the Great Physician who is caring for Elijah and his hand is the best place to be. 

I can't wait to get home and see all my people!!!

Recovery!

He's out and he did well. They had to apply pressure to the puncture area for a good 20 minutes after the procedure was done, and now the trick is keeping him still. Hopefully I'll be able to nurse him in about an hour.

Here we go.....

Okay. They have taken him back. The procedure should take about 2 hours. They will puncture his femoral artery near the groin and thread the micro catheter up to the ophthalmic artery...then deliver two chemotherapy medications.

Then he will be in recovery for 5 hours with a splint on his leg.

We know that He is in good hands (as my dear friend reminded me-first in God's, then in the doctor's).

Oh Lord, be near to my baby boy and hold him close to Your heart.

Pray for Elijah!!

Elijah goes in tomorrow morning at 8am EST for his chemo treatment. Please be praying for our little guy! Thank you!!!

Grace Explosions....

Last night, the NYPD escorted a large group of us from the Ronald McDonald house, with sirens and lights, to a waterfront location to watch the fireworks.  And even though my heart ached, missing my own little firecrackers at home, I was overcome with the kindness, the generosity and care that the NYPD showed to us all.  It was truly a special gift.

This morning, I got up early to adventure over to the West Side to meet a friend for church.  The other day, as I walked through Central Park, I had seen signs for Belvedere Castle, and I wanted to check it out (I thought my boys would love it!). Unfortunately, there were many stairs, so I couldn't get there with the stroller. Imagine my surprise when I got this beautiful view from another angle:

I went to church at Redeemer Presbyterian on the West Side.

It was beautiful and lovely, and life-giving. But the coolest part....check out the new sermon series that started this morning:

"FAITH IN AN AGE OF UNBELIEF: Elijah and Elisha."

So. Cool. 

And then, I had a fabulous brunch with my friend and her daughter, followed by walking through more of Central Park.

Sometimes, even in the difficult times there are grace explosions. Oh Lord, help me not to miss them.

So beautifully and appropriately, church ended with one of my favorite hymns:

1	“Great is Thy faithfulness,” O God my Father, There is no shadow of turning with Thee; Thou changest not, Thy compassions, they fail not As Thou hast been Thou forever wilt be.
	“Great is Thy faithfulness!” “Great is Thy faithfulness!”   Morning by morning new mercies I see; All I have needed Thy hand hath provided—     “Great is Thy faithfulness,” Lord, unto me!
2	Summer and winter, and springtime and harvest, Sun, moon and stars in their courses above, Join with all nature in manifold witness To Thy great faithfulness, mercy and love.
3	Pardon for sin and a peace that endureth, Thine own dear presence to cheer and to guide; Strength for today and bright hope for tomorrow, Blessings all mine, with ten thousand beside!

NYPD!!!

The NYPD 19th Precinct came and volunteered to host a BBQ at the Ronald McDonald House. The food was excellent and they were so kind. They thought Elijah was cute so they had us hop in one of their pictures!

Thank you to the amazing NYPD for their faithful service and their awesome food!!

Some Light Reading....

It's late tonight in NY, but I'm trying to keep us on a schedule that won't be too hard to transition back to California time. 

I had such a lovely evening-I ate dinner with a family whose 21 year old daughter has a rare cancer. She is doing a clinical trial at Memorial Sloan Kettering and seems to be doing very well. 

Since I research things...(it's just what I do!), I thought some of you might be interested in this article on intra arterial chemotherapy for the treatment of retinoblastoma. This particular article is written by Elijah's current doctor.

https://www.eyecancer.com/content/documents/intraaarterial_chemo.pdf

Also, here is a short video that shows the facility and doctor where Elijah is being treated:

https://www.mskcc.org/videos/meet-retinoblastoma-team

Honestly, it is such a privilege to have access to such amazing care.  I don't think I posted these statics earlier, but Elijah's doctor told us that last year (not ten years ago!), the worldwide survival rate for retinoblastoma was 50%. Much of that is due to not having access to medical care! Last year, the survival rate for retinoblastoma cases at MSKCC was 99%.

There are no guarantees. We know that. But we are humbled and feel so thankful to be working with some of the leading experts in the world for this cancer. On both sides of the country, we have really received excellent care and we are thankful!!

Adventures...

Sometimes in life, you just don't exactly know what to do. We all feel it, especially when someone you love is hurting....you just want to DO something. Well, there's not a whole lot I can DO for Elijah except wait for Monday morning. He will go in and have the chemo procedure and then he will be in recovery for about 5 hours.  Then, as long as all is well, we will fly home Tuesday. Yay!!!

But in the meantime, I just need to wait. Elijah is a super sweet baby, but tends to be either super happy or super fussy.  So...here in NY, we do a lot of walking. Yesterday I walked around for about 2 hours....just taking it all in. Today we decided to be adventurous and see if we could walk to the West Side. We made it! We went to the American Museum of Natural History.  Here in NY, they allow you to get in by donation-meaning, you pay what you can.  It is so awesome that they do this....but pretty humbling to walk up and admit that you really can't afford the "suggested donation."  I cried. I think partly because all my emotions are at the surface, and partly because any explanation I could give all leads back to "my baby boy has cancer."  But they were very kind, and I didn't have to give an explanation. I just gave what I could and it was fine.

The main entrance-I had to walk around back with the stroller, but I thought the kids would enjoy the statue of Theodore Roosevelt.

This was over by the entrance I used. :)

I'll be very honest-I really just couldn't get into a "museum mindset" today. So, I walked through dinosaurs and such, and then tried to find a place to sit and feed Elijah. That took me about an hour or so. I'm still glad I went, but I just had a lot on my mind today.

The West Side is very beautiful! At least, what I saw of it. We walked over by going under some pretty sketchy bridges and such, so on our way back, we cut through Central Park.

We walked past the library, but they are closed today for the holiday.

It was really fun to have an adventure. Sometimes you just need to clear your mind and wear out your body at the same time. That we did! We made it back to Ronald McDonald house and are going to lay low and rest until dinner time.

 

Time for bed...

I just got word that Ben made it home! I'm so thankful that he is with the kids, and I'm sure they are bombarding him with questions as we speak.

Not every Ronald McDonald house does this, but the one in NY offers dinner every night. I knew I needed to be around people so I made my way up to the terrace. I met some lovely people, and specifically a family with four kids-two boys and two girls. Their 22 month old boy is at the hospital receiving treatment for cancer.  

It is amazing how something so horrible and tragic like cancer can also be so unifying. It is encouraging and inspiring to hear the stories of other families. 

It's late now, so Elijah and I will head to bed. Thank you again for praying!!!

It's hard to say good-bye....

I'll be honest. I woke up overcome with hope that they would get Elijah in this morning, and then we would all fly home tomorrow or Saturday.

So hopeful that Elijah didn't eat after midnight just in case.

At 8:30am, Ben got into a taxi and headed for the airport. It was so sad to see him drive away, but I still had hope.  Ben held off on "checking in" for his flight until 9:30am, just in case.

Finally at 9:40am, I got the call. They just couldn't get Elijah in today. He will be seen Monday.

Now believe me when I say I am so thankful for insurance approval, and so very thankful that Elijah will receive his chemo treatment on Monday (KILL the cancer, I say!!!!).

But I would be disingenuous if I did not admit to being heartbroken a bit. I have never missed one of my kids' birthdays. I have never been away from them for a holiday (like 4th of July.) I know there are plenty of people who would LOVE to be in New York on the 4th of July. But as I told Ben: there are six firecrackers that I want to see (aside from the one I'm with), and none of those six are in NY.

I have never been away from my children for this long.  A week??? Never.

So today, I will be reading through the verses, the thoughts, the prayers, and the support. I need it.  I trust that there is a reason for Elijah to be seen Monday instead of today. It may not be my preference or what I hoped for...

But as a handsome young 21 year old once told me long ago....

"I'm hopeful for things. But my hope is not in them."--Ben Hester 

I'm not necessarily lonely or anything. I have some good books and a place to stay, and an awesome health food store down the road. It's just that my heart is in two places at once...so it feels broken.

But I suppose the key to the brokenness is to feel it for what it is-it is true and right that my heart feel torn. But one day it won't be.  I can be hopeful for many, many things. So hopeful that I walk toward them and act in accordance with that hope (like not feeding Elijah, etc.). But when it is all said and done, my hope can't be in them. Not in an appointment time, or a holiday together as a family, or in it all working out according to my timetable. 

No. My hope must remain in Christ, because it is the only hope that does not disappoint.

"Therefore, we who have fled to him for refuge can have great confidence as we hold to the hope that lies before us. 19This hope is a strong and trustworthy anchor for our souls. It leads us through the curtain into God’s inner sanctuary. 20Jesus has already gone in there for us. He has become our eternal High Priest..."

Hebrews 6:18b-20a 

Goodnight New York....

Today was long and exhausting. But WOW!!!! All of your beautiful prayers, thoughts, verses....not only were they powerful but they upheld us. Here in New York....we were not alone. There was an army of people upholding us, and we are so very thankful.

They can't get Elijah in for his chemo tomorrow...so it looks like it will be Tuesday next week. Tomorrow morning, Ben will fly home to our kids who have been anxiously awaiting our return.  They were sad to hear that I will be staying with Elijah for another week.  Still working out all the details for that. The Ronald McDonald house has graciously allowed me to extend my stay. Still working on flights and things.  Please pray for the kiddos-it's hard to have their momma gone. But they will be so glad to have their Daddy!!!!

I don't know all the details for Elijah's procedure....but I do know that he can't nurse after midnight the night before.  And afterwards he must lay flat for 4-6 hours since they are going in througb the femoral artery.  Please pray for me-that my back would stay strong, that I would navigate the city and getting back and forth from the hospital and the airport well, Elijah and my return trip, his chemo treatment, and one last small request....that I will eat. :) I'm sort of a homebody and so I just need to take care of myself so I can take the best care of Elijah.

I don't know what to expect....but I'm trusting Jesus. There's no other way for me.

So after a long day....it's time to say goodnight to the city. I will continue to read and cherish all the messages and comments you have sent. What a beautiful thing happened today!!!! All of you fought with us, on our behalf...not with weapons but with prayer.  Oh, how thankful I am to have all of you on this journey with us....and oh, how thankful I am to rest tonight in the arms of my Savior.

Thank you for your continued prayers!!!!

"My soul finds rest in God alone; my salvation comes from him."

Psalm 62:1

Insurance Update

Insurance has approved our request!!! Thank you so much for standing in the gap and praying with us.

Unfortunately, at this time, they are all booked for tomorrow so we will have to wait for next week for Elijah to receive his chemo treatment. 

I'll keep updating as I am able.

Love to you all.

Sad times....

I'm not going to lie. Today is hard. Hours on the phone with insurance has brought me the same answer: "we'll let you know."  

Through tears, I explain again how my baby has already lost one eye to this cancer. I explain how in 6 weeks he developed 3 tumors, and now only 3 weeks later he has 3 more.  I explain how we are here, in New York, and I started this battle last week when I was in California.  I explain how, yes, legally, they may have time to make a decision but my baby may not have that time.  

One woman I spoke with was so very kind, and appropriately named Hope....she fought for us to get a supervisor, and came back almost in tears herself to tell me they would not speak with me.

I know how frustrating and infuriating it is...but I'm writing to say that I need help. I need back up and encouragement. My heart is hurting today for my baby boy and for my kids at home without me.

So. Here's what I am suggesting. Right now, keep praying for Elijah-that he would get exactly what he needs.  

Pray for us to endure *patiently* and faithfully.

Pray for the Spirit of God to be near and the Word of Christ to dwell in us richly.

And.  If you have a favorite verse, will you post it in the Facebook comments?

We believe that God's Word is alive and active. It is powerful for casting down strongholds. It is a strong tower, a refuge in times of trouble.

Help us to wait on the Lord well. I may not be able to read them all right away, but please know that every comment, every prayer, every thought on our family's behalf is cherished. We love all those who have partnered with us and we need you. Thank you.

I read this today and found it beautiful. Here's to producing MUCH fruit y'all:

"Mountain tops are for breadth of view and inspiration, but fruit grows in the valleys."--Ruth Graham