Thursday, March 31, 2016


Well, Elijah came out of surgery and everything went well.  He does not come out of anesthesia very well, and knowing that he has to lay still on his back for 5 hours in recovery, they will often give the kids some sedation so they will rest.
As soon as we wheeled Elijah up to his recovery area, he went nuts! It took about four of us to hold him down and he kept kicking the brace off of his leg.
As we were holding him down, the nurse looks up at the anesthesiologist and asks, "Didn't you give him anything??"
He replied, "Yes. Lots."
Whatever they gave him was no match for Elijah! I climbed into a bed with him and nursed him. That calmed him down for about 15 min. The nurse brought a DVD player with Elmo videos. That worked for about 7 minutes. I was able to hold him and got him to sleep. He laid on me for about an hour. Finally, we tried the stroller, which really helped. We could gently rock him back and forth as long as we didn't go too far (since he was still hooked up to machines), and we had to keep him flat.

He is already having some more side effects than last time. He has thrown up a couple of times and doesn't seem to have an appetite. We've given him the first of his three medications-this one is anti-nausea medicine. He didn't need it last time, but he was so young then, and was only breastfed.  So. We are very thankful that when we moved our flight, I requested a day for recovery. I think he will need it.
We plan to lay low and take good care of Elijah and then we will be anxious to return to the rest of our crew.


Elijah got all changed into his gown and they took him back for surgery.  More waiting. :-)

Wednesday, March 30, 2016

Prayers answered!!!!

Honestly, I was feeing very doubtful about our insurance company approving Elijah's chemo procedure in time for us to have it this week. It just felt so familiar....I could remember fighting this battle last time and getting delayed.
Well! We just got the phone call that Elijah is approved and scheduled for tomorrow morning. He is the youngest patient for tomorrow, so he will be seen at 6:30am.
So thankful!!!!

Tuesday, March 29, 2016

Warming up....(from Elijah's exam)

At times, it can get so cold that you start to lose feeling in your fingers and toes.  There can be a similar feeling sometimes, when you're sitting in a doctor's office making decisions about cancer treatment.
Not that you lose feeling altogether-but for a moment, you're not quite as sensitive.  You have to be rational and think about things like numbers and percentages.  You have to weigh options and consider outcomes.  You have to take in lots of information, and then cry out to God for wisdom to make the right decisions.

Today, we sat in the doctor's office and learned that this tumor in Elijah's central field of vision is strong and stubborn. It has survived the first chemo treatment, as well as laser treatments including those with the dye.  It is not a large tumor. In fact, they would not normally use intra-arterial chemo to treat it. They would normally blast this tumor to its death with laser treatment.  Except in cases like Elijah's.  This tumor is within approximately 50 cells of his central field of vision.  Meaning, it's like a dot on a paper away from growing into his central field of vision.  If that were to happen, he would lose vision that he could never regain.
    Unfortunately, treating with laser-while helping to keep this tumor from growing as rapidly as it probably would, is not gaining us the ground we need.
    Elijah was supposed to have intra-arterial chemo tomorrow.  Our insurance did not approve the procedure in time for him to be scheduled tomorrow.  We are expecting him to be scheduled for Thursday (as long as insurance approves in time), which would delay our return home a few days.
So, we wait.
The RMH was all out of cribs, which made for a rough night last night. Especially given the delay, we went ahead and bought a pack and play so that hopefully Elijah will be able to sleep some in the next few days. :)
I'm really glad Ben was able to be here with me as we had to make some decisions. I feel like we were united and both heard the same things and felt the next step to be pretty clear.
We don't know yet if Ben will return as planned, or stay with me through Elijah's treatment.
But now that the decision making on his treatment is over, we can begin to "feel" and process it all as we move forward in the days to come.
Thank you for praying!
We stopped at a beautiful cathedral, which was so good for my soul today:
And the park, while sort of cold and windy, is absolutely gorgeous in the spring:

Monday, March 28, 2016

Bumps in the road....

Well! We were still working out details of childcare until yesterday evening, but by God's grace, we *think* it is figured out. Ben, Elijah, and I left early this morning to head for the airport.  We got out to wait for the shuttle just after the rain slowed down.  The shuttle had to go past our terminal because of construction. I was dreading the long lines, only to find that we walked right up to the counter.  We got through security, got to our terminal, and were *shocked* to find that we were sharing our flight with friends who love Jesus and are living life in surrender to Him.  It was such a fun encouragement, especially since we have NEVER had a flight via Nashville.

We changed planes and the second flight was a little better for Elijah, but I found myself more sick than I have ever been on a flight-just due to motion sickness.  Probably not eating much all day did not help the situation.  The cab ride also did not agree with me, and I looked over at Ben, who by this time, was also feeling pretty queezy.  We did, however, make it to the RMH, and then headed out to get some food.
Elijah is so smart-he was trying to put the straw into his water cup.
The sky was beautiful and mysterious with light colored clouds floating against the dark sky.
We found out that Judah is sick at home, and so our hearts are torn.
As I got to the room, feeling so sick from the plane ride, and feeling horrible for Judah (and my mom who is caring for him), I told Ben, "It's times like these when I wonder why we are even doing all this!!!!"
And Ben-even though he understands how I was feeling in the moment sweetly reminded me: "It's all worth it."
Yes. There are twists and turns and bumps in the road, but it's all worth it.

Early tomorrow morning we will be at the hospital for Elijah's exam under anesthesia.

Saturday, March 26, 2016

One Year....

There are moments that change everything.  One of those moments for our family, was when the doctor told us that our youngest of seven children had cancer.

Just over a year ago, we began this crazy journey.  There have been so many adventures, so many people we have met, so many ways in which we have seen God come through.

There have been some hard and dark moments too.  Times when nothing was "working out", times we felt alone, and times where we felt like we didn't have what we needed when we needed it.

God's kindnesses are everywhere.
One of those kindnesses is in having what many would call Elijah's "cancerversary" (or, the annual date of his diagnosis) come just before Easter.

To the group of rough-around-the-edges men who had given up their lives to follow Jesus, things looked pretty dark in the days between the cross and the resurrection.  They had left everything. And now they felt as though they had lost everything.  The hope of Jesus Christ restoring the "kingdom" to Israel had been lost.

And so it is, that some days feel like the day of the crucifixion.  We see our hopes fading until they are laid to rest in a quiet tomb.
"This isn't how it was supposed to go!", we cry.
The crucifixion was the death of hope for so many.  And following Christ hasn't changed that-it feels many times like we see hopes and dreams die.  I have had hope rise in my heart so many times, only to be met with disappointment:
Maybe Elijah won't have the genetic mutation.
Maybe he will have perfect vision in the other eye.
Maybe we will have childcare and the details of my trip worked out before the day I get on a plane.

Those three days between the cross and the resurrection are SO necessary.

In those three days, the disciples felt disillusioned-enough so that they went back to what they had been doing before they met Jesus.
For me, it is in those moments where my "hopes" end in disappointment that I realize my hope was misplaced.
It's easy to do. It's human to do.
I'm like the disciples, waiting for Israel to be restored to power and position. Only I'm waiting for the happy endings and the peace and prosperity that hasn't been promised in this life.
Jesus called his followers to deny themselves, to take up their cross daily, and follow Him.

But the days between the cross and the resurrection were necessary in order that false hopes could be laid to rest.  It's difficult and painful to see even false hopes be taken and shown for what they really are.  It leaves things dark, still, and quiet.

You're left with the realization that it isn't where you expected to be. It's not going how you thought it would go.  It's darker and harder than you thought.

This dark and quiet place is where true hope enters....soft and gentle at first, growing brighter and brighter with each moment. True hope burns strong and steady. It brings with it a new light, which shines upon your situation and shows it for what it really is.

That moment-the awareness of the resurrection of Jesus Christ-that changes every. single. thing. 

The ground shaking. The stone, rolled away.  Empty tomb. Grave clothes neatly folded.

One of my favorite Veggie Tale songs says:
There is nothing left to fear
Nothing heaven knows
For He died for us to give us life....
And to give us hope He rose.

With Jesus' death on the cross, He canceled our debt of sin, and freed us from the penalty that was meant to be ours.  But even at the cross, with sin covered in Christ's blood, we are still left in a world where it doesn't always go the right way.  
But in those next three days, in the quiet, dark places, He was at work. He was freeing us from every false hope. He went down into the depths of the darkest, most terrifying enemy-death, and the ultimate separation from the Father's presence. 
And in victory, He presented that great enemy as disarmed and defeated.  He appeared to the disillusioned men and infused their lives with a power from above, a power that transformed these men into trustworthy messengers, ready to die in this life because of the hope they had for the next one.

And so, the moment we learned of Elijah's cancer changed our life forever.  But during this time of year, even that difficult moment is overshadowed by the hope of another. The moment that Jesus conquered death and purchased a hope that cannot be stolen, shaken, or laid to rest.

There may be more dark and hard moments ahead. In fact, I can guarantee that there are because Jesus Himself said, "In this world you will have trouble."
And then He said, "BUT be of good cheer (take heart!). I have overcome the world."

Easter morning has always been one of my absolute favorites. The dark of night gives way to the coming light....and the darkness cannot stop it.

Every Easter sunrise is bursting with the hopeful reminder that His Kingdom is coming in its fullness.  Every sorrow will be washed away, all the wrong made right.  Even in the dark and quiet moments, He is at work.  My heart needs to be reminded that the life to come is just as real, more beautiful, and even more powerful than the disappointment I may face now.  

The Light is pushing back the darkness.
So. I may not have all the details of my trip to New York figured out, besides the fact that I need to be on a plane Monday morning.  
But what I do know is more important.
HE IS COMING.  When Jesus returns, He will set things right, and fulfill the hope that he purchased by conquering death.  He is preparing a place for us.
He is risen, indeed!!!!

Thursday, March 24, 2016

2 updates!!!

1.  We finally got insurance approval to cover Elijah's chemo procedure from last July!!!!  For some reason, they decided to cut the check to Ben instead of to the hospital... But we got it sent off to New York and we are so thankful to have that weight off of our shoulders.  ESPECIALLY since there is a possibility that he will need the chemo procedure again.

2.  I got some good sleep last night!!! I decided last night to try one of those airplane pillows that go around your neck.  At least between 11:30pm and 4:3am I know I was out pretty hard.
I'm so thankful for some rest, and I appreciate all the prayers!!!!  As a sweet mentor of mine has said, "Sometimes the most spiritual thing you can do is take a nap."--Sally Clarkson.

Wednesday, March 23, 2016

Rejoice in the time to come....

So yesterday, I finally had the excision surgery done on my chest. I'm glad I just did it, because quite honestly, if I had known what I was in for, I probably wouldn't have done it.

By the time I got home late last night (thanks to an amazing time with an amazing group of ladies), the anesthetic had worn off and nothing hurt at all. As long as I didn't move. ;-p

I'll have a nice size scar on my chest, reminding me that there was something there that could be damaging, even dangerous.  It needed to be cut off in order to keep me safe.

Oh Lord, may I be so vigilant, may I "guard my heart above all else, for it is the well spring of life."  May I be so willing to cut off all that would bring darkness into my heart and mind, rather than the light.

Last night, as I propped myself up on Mount Pillomanjaro.....I broke out into laughter.  I'm pretty sure that Ben wondered if I had just totally lost my mind.

I told him that I've been exhausted and desperate for a good night's rest, and I laid down knowing it would likely not come as I closed my eyes-unable to roll or turn or move much without pulling on deep stitches.  I laughed, thinking of how I am supposed to be on a plane Monday with a baby that I can't lift.

God has to show up. There is no way this will all work out apart from Him intervening by His grace.  
Sometimes this life becomes like a weary head, longing for rest....and the looming knowledge that it may not be close at hand.  But GOD is.  He gives what is needed and as eyes close, we can, in faith, REJOICE at the time to come.

Yesterday I was reading my devotion, and the words that came were so meaningful.
"Impurities are afraid of the fire, but gold is not."--Joni Eareckson Tada

I easily see my imperfections....but as Job said:
"He sees the way that I take;
When He has tested me, I shall come forth as gold."  Job 23:10

And so, my God sees the way that I take.  He is not afraid to place me into the fire, for He already sees the gold that He will bring forth. (Even when I can't see it.)

But I can rejoice in the time to come, knowing that He can see beyond my impurities...He sees what will emerge after it has been tried, heated, purified. One day, I will trade this sin-stained life and this sin-crippled heart for perfection in Christ. That is worth rejoicing in.

"I'm convinced that the recollections of past sufferings may one day enhance the bliss of heaven. Eternity with the Lord will be so much more heavenly to those of us who have been tested, battered, and tried time and again.  God wants to strengthen your faith...and prepare you for joy.--Joni Eareckson Tada

Thursday, March 17, 2016

Judah Sean

Oh, my darling Judah Sean,
     I finally cut your hair-and it was just as I feared. You look older already. But as every momma learns, no amount of wishing can stop the passing of time. And the truth is, that while I long to hold on to these moments that fly by so quickly, I am at the same time delighted with each passing day at the young man you are becoming.
     Tomorrow you will be five years old. At five, you can read very well-and while you aren't confident in your abilities just yet, I know how well you can read because I sit and listen to you everyday.  Well, most days. ;-). You are also doing well in math, and you love the Latin vocabulary videos along with the rest of us because they are so funny.  (I think they give you inspiration for more jokes!)  You LOVE to play outside, especially with your brothers.  You and Ezra are very close, and I know you look up to him so much. Since quarters are so close around here, it is only natural that sometimes you two have some difficulty getting along here and there.
     You are a very funny, goofy guy. You love to make jokes.   
     You and Evelyn love to sit on the counter and "help" me make dinner. The other night you were quoting a movie saying, "Should we put a little "kick" in it??"  While I was cutting your hair, you also kept asking me, "Does it need a little "kick" to it? :-)
     My sweet boy. You are the "kick" to it. You make life so much more fun. You give such great hugs and snuggles, and you have the most loving spirit.  I can see the seeds and sprouts of what will be the most protective, loving young man, and it gives me such great joy.  Never stop loving like that.
     You were my biggest child. By far.  Four children had come before you, and only one of them had broken the 7 lb. mark, and that one by just a few ounces. Then came my 9 lb. boy!!!  I remember, at that time, thinking that it was too much for me-that it might break me.
     Sometimes, life will feel like that. Sometimes it feels like so much more than we think we can endure.  It seems as if there is no possible way we can come out the other side and still be whole.  Whether it's life in general, or just a bike ride uphill, there are times where you will think you just can't make it. But Judah. You are God's precious reminder to me that some of His greatest gifts and blessings come through difficulty and pain.  I can still remember the pain of your grand entrance into the world....and yet, now, looking back, that pain seems so minuscule in comparison to the great joy I have experienced in being your mom.  And so, it turns out, perspective is always key to navigating pain.  When life gets really hard, Judah, I want you to remember that our God promises us that the pain we endure now is small, lasts a short time, and is actually at work producing glory for us that we can't see right now.  In the midst of pain, it feels never-ending.  It feels unbearable and as if it will break you.  But you and I, we are living proof that the other side of pain is sometimes more blessing than you could have ever imagined.  I needed that reminder this year.
     Judah means "Praise", and Sean means "God is gracious."  It is so right and so fitting that one who praises God would be one so full of joy and laughter.  No matter what this life holds in the days to come....keep praising God. Keep believing that He is gracious. Keep fighting for joy by laughing hard and loving big.  The presence of God is the one thing that will give you the right perspective.  It is the one thing that will allow you to see beyond difficulty, and to believe that what's ahead is far better than you could dare to dream.  Thank you, for smiling and laughing and cracking jokes and reminding me to believe that difficulty and pain are never the last word for a child of the King.  May your jokes and your joy spread like wildfire, welcoming all to come and serve the King who is Himself the greatest joy we can imagine.
I love you.
For the King, 

Wednesday, March 09, 2016


I'm still working my way through the radiology report, but it looks like the brain is clear. Specifically they are looking at the pineal gland, which is the most common place they find tumors in kids with RB.  In general, they don't discover these tumors until about two years after diagnosis, so Elijah will continue to have an MRI every 6 months until.....I can't remember if they said age 3 or age 5.

There was, of course, evidence of disease in his left eye, which is what I am working my way through in trying to get as much information as possible from the report. I know that Elijah's exams under anesthesia give a much better picture of what is actually happening in the eye, but I am a momma bear. So I go over ever inch of the report and try to educate myself as much as possible. :-)

I don't think there will ever be a day where waiting on exams, MRI's, and reports will get "easy", per se, but I am so thankful for each and every prayer from those who were waiting "with" me today.  It makes all the difference.

Once we got home, I noticed that Elijah is pretty warm. So....he may be coming down with something. Time to hunker down and snuggle.
He is pretty happy driving his tractor around right now. (I wish you could all hear the sound effects!) It's so good to be home!!!!

Full Circle....

There are two areas where they do imaging at CHLA. The first area is usually for inpatient MRI-that was where Elijah was diagnosed. I remember sitting in that area outside the MRI, as the doctor came out and told us it was cancer.

For Elijah's follow-up MRI, we are usually at the other end of the hospital at Radiology.  For some reason, today was different.

Today, we walked the halls back to the inpatient MRI room.  I changed Elijah into his gown and held him down while he screamed as they got his IV in and took blood for the oncologist.  We were in the same small area where we were that day, almost exactly a year ago.  

I walked him back and as the medicine took effect, he finally gave in to the sleep. I laid him down, and gave him a kiss.

And now, I wait.
This picture is before the IV. ;-)

Tuesday, March 08, 2016

Heading to LA and NY highlights

Tomorrow, we head back to CHLA for Elijah's MRI. He still needs to have an MRI every 6 months to make sure he doesn't develop tumors in the brain.  He also sees his oncologist, so he will have blood drawn and get checked out.

We came back from NY just in time for our homeschool co-op, and then our orthodontist office had a patient appreciation night at the local skating rink.
The boys were off and skating so I didn't get many pictures. 

The time flies by these days! Elijah got his first haircut in NY, so I can't resist posting some pics:
I couldn't imagine anyone but our friend Joe doing Elijah's first haircut. He did such a good job and my baby boy looks SO handsome. :-)
Best friends! We had to check out the treats at Serendipity in this is us after the sugar coma.  We had the Salted Caramel Frozen Hot Chocolate, and it was delicious!!!!!
The Empire State Building from "Top of the Rock". 
Elijah signing "more."  He usually laughs at me when I try to get him to use sign language. But now that he realizes he will get "more" by using the sign, he will occasionally humor me. :)

Tuesday, March 01, 2016

Elijah's Exam

Elijah had his exam this morning and there were no new tumors!
There was, however, still some "meat" to the tumor that is in his central field of vision.  They treated it with laser today, and thought they might possibly use the green dye. They did not end up needing to use the dye.
We will return in 4 weeks, at which time we will look at options depending on how this tumor responds to the laser treatment done today.  We may reconsider more intra-arterial chemo, or treat again with laser.
The big concern is not the size of the tumor, but it's location.  It is a "tug of war", trying to balance treatment of the cancer with saving his vision. We "aren't losing the battle", but we aren't really winning either.  We could cure him right at this time, but it would be at the expense of his vision. So instead, we will continue to tug, and fight to maintain vision! :-)

We also have an appointment with the genetics department this afternoon so that Ben and I can do our genetic testing to look for the mutation that Elijah has.

Thank you all for praying!