Sunday, September 27, 2015

I Will Trust in You....

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

L.A. Day....

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.
(Big boy! Sitting in the exam chair! He actually sits on my lap so I can hold his head against my chest while they remove his prosthetic)

Sunday, September 20, 2015

Wednesday, September 16, 2015


This is Ben pushing Elijah and I around Children's Hospital in a wheelchair.

I was going to post a picture of my swollen, infected foot but I decided against it. Suffice it to say....I literally cannot walk on it at all. I tried crutches, but it was becoming painfully clear to us that I just wasn't going to be able to get around on my own. Thankfully, Ben was able to come and push us around the hospital in a wheelchair. Hopefully the antibiotics will do their work and I'll be back on my feet soon!


Elijah's MRI was all clear!!!! (Well, except for the tumor in his left eye that we already knew about.)

This is great news and we are so thankful!!! 

If I rise on the wings of the dawn....

9If I rise on the wings of the dawn,

if I settle on the far side of the sea,

10even there your hand will guide me,

your right hand will hold me fast.

Psalm 139:9-10

We left early this morning and are on our way down to CHLA for an MRI, blood work, and a visit with Elijah's oncologist. Ben ended up taking off work to drive us down, because one of my skin biopsies got infected and I can't walk.  Not exactly how I planned for things to go, but I'm very thankful to have Ben with me nonetheless.

The minute I walked out the door, I heard this verse in my mind. I'm so thankful His right hand is guiding us and holding us today.

Monday, September 14, 2015


One of the (many) books I love is Dr. Seuss's Oh! The Places You'll Go. I really do find it contains some deep and sweet thoughts, but there is one point at which I must disagree with him.

He calls "The waiting place" a most "useless" place:

You can get so confused
that you’ll start in to race
down long wiggled roads at a break-necking pace
and grind on for miles cross weirdish wild space,
headed, I fear, toward a most useless place.
The Waiting Place…

…for people just waiting.
Waiting for a train to go
or a bus to come, or a plane to go
or the mail to come, or the rain to go
or the phone to ring, or the snow to snow
or the waiting around for a Yes or No
or waiting for their hair to grow.
Everyone is just waiting.

Waiting for the fish to bite
or waiting for the wind to fly a kite
or waiting around for Friday night
or waiting, perhaps, for their Uncle Jake
or a pot to boil, or a Better Break
or a string of pearls, or a pair of pants
or a wig with curls, or Another Chance.
Everyone is just waiting.

I am not very good at waiting.  I much prefer action-productivity!  But life has taught me that some of the deepest, most holy work happens when I must wait.  Whether it is waiting for the plan to unfold, or the test results to come in...waiting shows us what is really lurking in the deep places of our hearts. Is it fear? Is it faith? Or, most likely, some combination of the two.

This week, I am waiting on the results of two skin biopsies that were sent off last week.  I am also waiting for Wednesday to hurry up and come, since that will be Elijah's 6 month MRI to make sure there are no tumors growing in his brain.

And while this type of waiting makes me long for the moments when I was just waiting for the blue stuff to sit in the toilet long enough until I can scrub....
Or waiting with a little person who is learning to use the potty (oh wait! We are doing that too!!!)....

I remember what God has taught me about waiting. Waiting on test results, or circumstances is always exhausting.  But there is a waiting that actually renews our strength.

So maybe, just maybe, that is what Dr. Seuss is saying after all.  There is a waiting that leaves us weary and exhausted-anytime we are waiting on our outward circumstances to give us inner peace.  But there is a waiting upon the Lord, which calls us to worship even while we wait. No matter what the outcome, He is still worthy of the worship offered in the waiting.

I can't say that I have mastered this by any means. But this week is another chance to practice. :-)

Saturday, September 05, 2015

Like a Bridge Over Troubled Water

We saw this beautiful bridge in Central Park on one of our many walking adventures. Poor Elijah, the travel is hard for him. When he ends up really fussy, the best course of action is to just start walking and to keep walking. This was from a good two hour walking session. 

Before cancer, and laser treatments, and had been more than a decade since I had been on a plane.  I am not an experienced traveler by any means.
I had met a few people, who, upon hearing that we were traveling to New York would say, "Oh! I just LOVE that city!!!"  It was curious to me, because at that point, all I could see was a place that didn't have room for my family and was so expensive I didn't know what to do.

Each trip, however, New York wins a piece of my heart. I see God's grace hiding behind corners and surprising me at just the right moments.

But the most interesting part about it is that it is not the city itself that has won me, so much as its people.  We have met so many amazing, kind, generous people in New York, and it just reminds us that we are all connected. There is still love and beauty and kindness in this world and it is worth noticing, and it is worth fighting for.  From California, through 18 states, all the way to New York, I have been in awe of the capacity the human heart has to love others, to give sacrificially, and to feel compassion for hardship.

So, to everyone who has loved, given, supported, prayed, and thought of us on this journey with Elijah-thank you. You have been like a bridge over troubled water. You have pointed us to Jesus and reminded us that we aren't alone.

And New York.  I love your doctors, your hospitals, your Ronald McDonald house full of hope and bright colors and big smiles.  I love your cafes and your bakeries full of colorful pastries. I love Central Park, and how I discover something new every time I'm there. I love your creative genius including hair stylists and floral arrangements and amazing food.
But most of all, I am forever grateful for the way you have loved and taken in my beautiful baby boy as he needs treatments for his cancer.
I would never have chosen this road, but imagine my surprise to find myself at a beautiful table in New York with stunning beauty, intelligence and love. 
We are so humbled to have been invited in to a group of friends and family so loving and welcoming.  It is part of the bridge...the one that God is building under our very feet to carry us across the waters that we never intended to travel.

It is a beautiful picture of how love multiplies and grows and expands our heart. We are very grateful to have returned home safely to California and all our munchkins. Our homeschool co-op has begun and the kids were anxious to attend and see their friends.  There are dishes and laundry and many things that need our attention here at home.

But as for New York, we will see you again in 4 weeks!  And whether in CA or NY, or somewhere in between, I pray that we will notice beauty and love and bring light wherever our bridge takes us.

Tuesday, September 01, 2015

Next steps

Elijah has his exam under anesthesia early this morning. He had had a really rough night, up every couple of hours screaming, no matter how we tried to help him. We were able to calm him down eventually, but then the whole process would start over. I think it was a combination of being exhausted, and possibly some discomfort in his ears from flying. Oh! And teething.

Anyhow! His exam went very well. His 3 tumors are now gone. He does, however, have one new tumor that they treated with laser.  There is a "moderately high" chance that it will need to be treated again with laser when we come back in 4 weeks. 

But overall, this is good news. In regards to any new tumors developing, we are in good shape as to his vision-they will most likely not grow in his central field of vision.  So moving forward, it is continuing to treat any new tumors and stay on top of any *reoccurances* of his old tumors, which are in more dangerous locations.

Elijah is KONKED OUT. He's been asleep for a couple of hours now. He nursed after the exam, but between little sleep and the anesthesia, he is tuckered out.
Mommy and Daddy are too. :)

Go Gold

September is National Children's Cancer Awareness Month. So, today we are heading over for Elijah's exam to see what's happening with his cancer.

Childhood cancer is gnarly. We have been privileged to meet some amazing families walking some really difficult roads.  Our hearts are with those families in prayer.

And we are going gold for Elijah!