Friday, October 09, 2015
Wednesday night I was dazzled by the beautiful city lights as I walked with some wonderful friends through New York.
Elijah and I made our way back to California. The second flight was rough-Elijah was in loud protest for the last half hour or so. Our plane arrived early and Ben got stuck in traffic....
But once we got on the road I couldn't stop taking pictures of the beautiful sunset that our God painted across the sky in Malibu:
There is so much beauty...so much that reflects the goodness and creativity of our God.
I am amazed by the beauty I have seen in the people we have met along this journey.
So to the amazing people I was honored to spend time with in New York (and those I missed on this trip).... Those who have given of their time, their talents, their kindness, their smiles....who have loved on Elijah and I, eaten with us, and shared smiles and stories....thank you.
To those who have sat next to a momma and her precious boy who wasn't always quiet but has really been through a lot, and have patiently endured load protests as well as squeals of delight...thank you.
To those who have faithfully walked with us and prayed for us-who have given, have encouraged, and have waited for updates on this side of the country (and everywhere in between)....thank you.
It is the beauty of those who bear God's image through loving and supporting and caring for our family in countless ways....it is this kindness that truly staggers me from coast to coast. My heart is so full of love, and truly thankful for each of you that I consider gifts from above.
Tuesday, October 06, 2015
Elijah is tuckered out. He didn't sleep super well last night.
He has no new tumors! That's great news. And the tumor that was treated with laser last month (and were told to expect to treat again this month) looked great and didn't need further treatment.
However....one of his old tumors had some new growth. Because of its lack of pigmentation, the laser is not quite as effective. So today, they gave Elijah an IV and injected a green dye (called ICG). This helps give color to the tumor so it will absorb more of the heat from the laser. They also gave him a little bit of pain medicine in the IV.
As you can see, he is sleeping now. We will be back in 4 weeks to see how things are going.
Thank you all for praying!!!
As an adult, sometimes special days like a birthday can get buried by real life. They get buried by bills, appointments, unexpected life events (like a baby with cancer)....
Ben Hester. We live a crazy life. We have seven kids and we are doing the cancer thing, and the homeschool thing....
Your birthday day is not at all how I would have planned it. I never would have planned to be across the country with Elijah, going to the hospital, while you and the kids are back at home.
But this is real life. We live a real life. It is messy, unexpected, often unplanned (much to my chagrin), and beautiful.
I remember one of our anniversaries early on...maybe our 2nd? Anyway, I was throwing up, you weren't feeling great. I thought somehow that we had missed out on getting to celebrate such a momentous occasion. But then I realized...This is the real celebration of marriage. It's not always pretty, or fancy. It's not always fine dining and having a babysitter. Really, it's celebrating what God is doing in the midst of the chaos we call life. And by His grace, He makes beautiful things.
Amidst all our differences, we share the most important common things: we love Jesus, we need Him desperately to rescue us, and by His strength, we desire to love people well.
For your birthday, our boys have been at work for weeks on a special project that they weren't able to complete just yet. But they have worked so diligently, because of their great love for you.
Our sweet girl made a piñata for you and filled it with candy because she loves you (and knows what a sweet tooth you have!).
I'm so thankful that we were able to celebrate together a little early.
But today, even though we are apart, even though it doesn't look like I wanted it to.
I wish you the happiest of birthdays.
38 looks great on you. Thank you for doing this crazy life with me. And especially today, thank you for trusting me to get Elijah what he needs.
And most of all....thank you for loving Jesus. It is the thing I treasure most about you.
Happy birthday. Today, may you know and feel how much God loves you. May you be inspired by that love to love others boldly and courageously. I love you, Ben.
Monday, October 05, 2015
Early this morning, Ben drove Elijah and I to the airport and dropped us off. This time, we just felt like it was best for our family if Ben stayed home (and went to work!). I know he is concerned about me traveling with Elijah on my own.....but we did make it to NY safe and sound. (I know this is due to the faithful prayers of many!)
Some of the sights are becoming familiar. I know, as I am driven past the East River, that soon we will exit 71st and I'm really close to Ronald McDonald.
Sometimes it is sad that all this is familiar...but today, I'm thankful that there is a comforting feeling. I am greeted with joy and hugs by the staff at Ronald McDonald who remember Elijah. I get to see familiar families that I've met before on previous trips, and I know how check in goes.
I know that we are going to go to bed early, wake up at 2:30am for Elijah's last feeding, and be at the hospital at 6:30am.
I'm anxious to see how Elijah is doing. And despite the crazy circumstances and the stress involved to get here....I am just so thankful to be here. Elijah is receiving such great care, and tomorrow, we will know a little better how he is doing.
Saturday, October 03, 2015
Even though Hurricane Joaquin has so graciously taken a turn eastward.... We still found ourselves highly unprepared for the cold and wind (and rain!) that may greet us in NYC on Monday.
I usually walk to the hospital on Tuesday morning for Elijah's appointment, so I needed to be sure I could keep the little guy cozy.
They were so kind to us at Patagonia, even giving us a coupon off our purchase. And since we got a 2T, hopefully Elijah will be cozy for months to come.
Sunday, September 27, 2015
One of my favorite songs right now:
When you don't move the mountains
I'm needing you to move,
When you don't part the waters
I wish I could walk through
When you don't give the answers
As I cry out to you
I will trust, I will trust, I will trust in You
A week from tomorrow, we will head back to NYC and check up on Elijah. I'm so thankful to go and see what's going on and how he is doing.
My foot is healing and I can walk again! We felt that a second opinion was needed in the dermatology department, so I headed up to Santa Barbara and met with a lovely woman dermatologist. The biopsy on my arm came back as: pigmented spindle cell nevus of reed. It is a benign lesion....but so clinically similar to malignant melanoma that 1) many pathologists can't agree on it and 2) the treatment is just to have it completely excised. Since it was not completely removed in the biopsy, I'll go back at the end of the month and have it completely removed.
She also felt that I have "atypical mole syndrome", meaning....quite a few moles that look *atypical.*. I really just thought I had lots of freckles, some darker than others. She picked two more to biopsy and I am still waiting on those results.
More waiting. :-).
But it is sweet to have a good song to play while you wait. I love singing to the Lord, reminding....telling my own heart that I will trust in Him. There's no where else for me!
Wednesday, September 23, 2015
I took Elijah down to LA to have some work done on his prosthetic. He has gotten it out a few times (like, during lunch at our homeschool co-op!). It was frequently rotating the wrong way, and it was time for it to be built up a bit.
They are so fantastic. Not only is the ocularist gifted in his work, but they all love Elijah and are so kind to him.
It turned out to be a most-of-the-day trip, but we are so thankful things went well, and that his prosthetic is more stable now.