Tuesday, June 30, 2015

Birthday boy....

(At your 5th grade graduation at church-you are officially part of j-high!)

Oh Caleb Paul. It is absolutely no fun for both your mom and dad to be away on your birthday.  It is hard to hear news that you didn't want or expect when mom and dad are far away.  
This is not how we had planned for your birthday to go. But if I am honest....this year hasn't exactly gone how we planned.  This year has been more challenging than most for us. BUT. I do believe that there has been more growth and more maturity because of it.
You are a remarkable young man Caleb Paul.  You lovingly and faithfully serve our family day in and day out. You often end up with the worst jobs. You are a strong and steadfast presence in our home. You love God's Word and faithfully study it every morning.  You challenge and inspire us all by the way you faithfully trust God.  

So this birthday....I hope you see two things from watching mommy and daddy in this time of unexpected challenges:
1. It is okay to be sad. There are times where this life is sad and hard and broken. We don't ever expect you to ignore it and slap a smile on it. It is right to be honest about the sadness that we feel-and we are not disappointed or upset with you when things are sad and hard (neither is our great God).
2. God is still worthy of our praise and our trust.  The brokenness of this life only reminds us that we were made for another life. The sadness reminds us that this life that is passing away can't satisfy our hearts because our hearts were made for eternity.  It is while we were still sad, and broken, and even while we were still adding to the brokenness with our own sin....it was then that God looked down and sent a Rescuer. And there was only One who could mend what was broken. His name is Jesus. All power and glory and honor belong to Him because He is the only one who could fix and restore what was broken. He was the only one who could lift our eyes and remind us that we were made for eternity...and that eternity with our Father is ours when we hide ourselves in Christ.

So, while it breaks my heart to not be there with you today, on your birthday...
I can only bear it because I know that nothing can separate you from the love of God. His love for you is so fierce, that I'm trusting it to greet you with the morning sunrise and birds chirping. I'm trusting Him to comfort you when you're missing mommy and daddy or when things are hard.
You are a treasure and an absolute delight to have in our home.  I cannot believe that God would entrust such a priceless gift to your daddy and I, but if He did then surely he sees you and will take great care to comfort you and be near to you until I can be right with you once again.
I love you Caleb.
Missing you,
Mommy (and Daddy)

Grace in the Storm

The graces are everywhere. You just can't always see them clearly. Especially when pain bears down hard and tears blur.  But they ARE there.

Like the gentleman on our flight, who lost his first wife to cancer....but he flew her to Memorial Sloan Kettering Cancer Center because it was the best.
Like preboarding because your child has a medical condition.
Like moments on the flight with this in your arms:
Like dinner, ready and waiting for you when you're tired from traveling.
Like Narda, from the Health food store who started boldly praying for Elijah in the name of Jesus, and reminded us clearly that we weren't alone.
Like how there are four kitchens, and rooms are assigned to a kitchen. And our kitchen is named "Hope."
Like free bagels and coffee at the Ronald McDonald house.
Like the beautiful sky painted for us as we walked to the exam.
Like how I was reading Psalm 119 this morning, and a friend texted verses from that Psalm to me.
Like how Ben was reading Isaiah 41:10, and a friend texted that one too.
Like the beautiful room and amazing staff here at Robald McDonald NY.
Like the sweet family also staying here from California.
Like the insurance worker who answered the call of a desperate mommy trying to get chemo for her baby....that worker went to bat for us!!! 
Like when we finished Elijah's exam and just kept walking....we ended up at the Metropolitan Museum of Art and Central Park.

Like a bus tour of NY, arranged by the Ronald McDonald house for those staying here.
(And those were just the ones I saw clearly). :)
It didn't go how we were hoping. All afternoon, working with insurance and we still don't have approval.
No mama should have to beg for their 5 month old to be put under and pumped with poison in order to save vision, to save his eye, to save his life.
But my job is to advocate for Elijah. And I did the very best I know how.
Now, I wait with HOPE and faith and trust God for the details.
God is bigger than insurance.
I may not like the timing. But if being a mother to seven has taught me anything, it is that these precious ones belong to Him. He loves them so much. 
Elijah is in good hands.
Tomorrow is a new day, and we will see what tomorrow holds for us.

50 "This is my comfort in my affliction,
    that your promise gives me life."
Psalm 119:50

Good Morning, New York City...

Yesterday was the first time I have been on a plane in over a decade. It was also Elijah's first flight. He did a great job!

We got into the city and checked in to the Ronald McDonald house. They were SO kind to us!!!! They were serving dinner, which was such a blessing because we were tired and hungry. :)

So many stories to tell....but for now, a quick update:
Elijah's exam showed 3 new tumors...and the laser treatment was done well, but did not have the outcome hoped for.  So, he needs to have the intra-arterial chemo. We are waiting for a phone call, hopefully saying that he is cleared by insurance for the procedure and to schedule it (for tomorrow?).
Just waiting. Please join us in praying that God would coordinate the details for Elijah to get the treatment he needs.

And the verse God gave to us this morning:
"Fear not, for I am with you; be not dismayed for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand." Isaiah 41:10

Monday, June 22, 2015

My future is so bright....

I gotta wear shades!!!!
Our little professor got his new glasses! Not only do they offer protection for his one remaining eye, but he is far-sighted, so now he can (hopefully) see a little better as well.

Everyone is very excited about Elijah's new glasses.

Friday, June 19, 2015

When Darkness Seems to Hide His Face....

"I rest on His unchanging grace."

Everyone was exhausted from the fast pace of our traveling. Ben and I both enjoy Colorado, and Caleb had really wanted to see the Tesla Museum they have there. (It's actually by appointment only-so I had called and gotten an appointment set up for Friday morning).  We decided to spend 3 nights there before the remainder of making our way home.  Having stayed in Des Moines, Iowa, we knew that everyone was pushing it and needed some rest.

At about 9:15pm, we arrived at our hotel. We noticed pretty quickly that the hotel didn't *quite* look like what we had seen on the internet. Our room was on the back side of the property. We lugged our half-asleep crew across the property, and climbed the stairs to the room. No elevator would mean several trips for Ben. The room was....not amazing, but we were all so tired! I came out of the restroom and noticed some tiny feet scurrying across the floor. Not any of OUR tiny feet. It was a mouse.  (Ben said he thought there might be a nest under the sofa sleeper.)

Well, knowing that no one would get any rest in that room...we checked out! But we needed a place to stay, and it was 10pm at night.

After an hour and a half of searching and calling...every hotel within 60 miles was booked.

This was so familiar. When we were in NY and had no where to stay, I remembered that the Lord was trying to teach me. He has a different direction for us to go.   Don't panic. Trust Him.  I was trying so hard to listen, to remember.

We found a Carl's Jr parking lot and tried to rest in our van. I was so cold and uncomfortable. I fed Elijah and then told Ben I was going to keep driving and let everyone sleep. (We had pulled a couple of all nighters on the way out).  

On the dark and lonely road, I had a lot of time to pray and talk with God.  Both Ben and I were disappointed. We felt the need to rest...the longing for a bed. We wanted to slow down and enjoy some time with the kids.  But God's plan was different.  Through prayer, I entrusted my disappointment to Him.  But then, I started feeling so sad. Caleb especially was looking forward to the Tesla museum.  We had hoped to visit Garden of the Gods, and maybe Focus on the Family. Quickly and quietly, I felt the Lord stir in my spirit: if I could trust the Lord with my own disappointment, then I could trust Him with Caleb's as well.

The night was long and dark. I found myself driving through Veil, Colorado thinking, "Lord! There's so much beauty here, but I can't see any of it in the dark!"

And so it is. The Lord unfolded before me so many lessons on this road trip.  This life is a journey...we are headed for home, but we aren't there yet.  There are some stops on the way that you just want to stop and enjoy. There are some that leave you reeling, and longing to move on as quickly as possible.  There is joy and there is pain in the journey. But always, always....our eyes are fixed upon home.  Sometimes, the darkness hides the beauty that is always there. Sometimes, the night seems so much longer than we feel like we can endure.

But no matter the journey, those who are in Christ have a promise. Joy comes in the morning.

The morning may feel far off. The difficulties of this life can leave us ragged and war-torn.  But there is beauty, even in the darkness. And look at the kindness of our God: that very same stretch of highway I found myself driving in the dark, was one that we had driven in the beautiful morning light on the way out.  Sometimes navigating darkness is all about remembering the light.

And so. The morning light greeted us and we made our way to a small cafe called "Daily Bread."  
We drove the rest of the way home and are safe in Ojai, California. All of us are overjoyed to have reached our destination.  I will fly back with Elijah a week from Monday. I will do paperwork, and hopefully we will all continue to process and share. But in the meantime, we rest. And the light is sweeter after the darkness.

Joy comes in the morning.

The old hymn calls out true and steady:
When darkness seems to hide His face,
I rest on His unchanging grace.

On Christ the solid rock I stand!
All other ground is sinking sand.

He painted the sky for us somewhere between Utah and California:

A favorite song of mine these days:

What if these blessings come through rain drops?
What if the healing comes through tears?
What if a thousand sleepless nights is what it takes to know you're near?
What if the trials of this life...are your mercies in disguise.

Sunday, June 14, 2015

Looking ahead....

My little New Yorker boy!

After a whirlwind of a week, we have prayerfully decided that transferring Elijah's care to NY is in his best interest-at least for now.  When Elijah was first diagnosed, he presented with unilateral retinoblastoma-meaning, just one eye. The tumor was so far advanced, and being that the cancer was only in one eye, the best decision was to remove that eye. Many times with unilateral, removing the eye is the only treatment ever needed, and that child can be done with cancer altogether. Obviously, that was our hope for Elijah.

Part of the reason they do genetic testing is because with retinoblastoma in particular, there is a specific genetic mutation that is present either in just the cells of the eye, or throughout the whole body. When that mutation is found throughout the body, the risk for secondary cancers are very high-the most common being bone cancer (I'm not sure as to why on that.)

On Thursday, June 4th, at Elijah's last exam in LA, it was kind of a surprise to everyone-including his doctor. Finding tumors in his remaining eye meant:
1. He had active tumors that need to be treated (which also means his exam schedule gets bumped up to every 2-3 weeks)
2. His diagnosis is now bilateral retinoblastoma, which is a whole different ball game
3. Virtually every child with bilateral involvement is positive for the genetic, germline mutation. So he is at much higher risk for secondary cancers.

With the active tumors present, and especially with one in his central field of vision, we want to be vigilant and try to preserve vision and the eye!  So. I will be flying back to NY with Elijah for exams. Once these current tumors are stable, then we will reevaluate.

We were able to take the kids on the Staten Island ferry, where they could see the Statue of Liberty...it was so cute hearing Ev say "Statue of Liberty".
We walked into NY and saw the 9/11 Memorial, and by that time we were all pretty beat.

We got back to the car and headed to Maryland. Ben's mom lives there (but was away on business travel.) It was nice to have a safe place to land for a few nights while we regrouped and planned our return trip. Her place is about half an hour from DC, so it also gave us a chance to show the kids some fun things that we study last year:

Lincoln Memorial
The White House-Emma told Caleb-"you should become president so we can see the inside of the White House."

Washington Monument-how cool to hear Revelation song playing as we came up

Looking towards the Lincoln Memorial

We had a great time, but it was super hot, and I think we were all pretty worn out. Thinking about making it home was pretty overwhelming. But, today is a new day and we are back on the road. We *hope* to make it home and recover for almost a week before it's time for me to fly back with Elijah.

Thank you all so much for being on this journey with us. 

Wednesday, June 10, 2015

An exam in New York

I am so, so thankful for the doctor who examined Elijah! He has been a pioneer in the field and had some great things to say.

First of all, he does not think Elijah needs chemo at this time. We can continue to treat with laser as long as it works. Unfortunately, it is too soon at this time to see if it has worked. But as long as it does work, then we can continue with that course of treatment. If at any time, the laser treatment is ineffective, then we will be back here in NY.  There are other ways that retinoblastoma tumors are treated, but they aren't good options for Elijah.

He currently has three small tumors. Two of them are not in his central field of vision.  One of them is. This makes it more difficult to treat with laser because of the chance of damaging vision. This is obviously more important as well because he only has one eye.  
We were told that the laser works best on dark eyes-it is a little more tricky on the lighter colored eyes. 

Obviously these are just statistics here, but they are important considerations. Because of the young age at the time of his diagnosis, Elijah has anywhere between 50-96% chance of developing new tumors until about age 7.
Again, these will be treated with laser as long as it is effective. The doctor said we should expect that he will need laser treatments in the future. 

We are SO overwhelmed by the love and support of so many. It has been amazing to feel like we have a whole army of friends and family doing battle alongside us.  There are SO many ways that God showed Himself to us today....

I went down to the front desk at 11:30am to ask about getting into the city for Elijah's appointment at 2pm. They said a shuttle was leaving the hotel at noon, to take me to the ferry, which will take me to Manhattan, where I should catch a cab.  I literally got everything together, put Elijah in the ergo baby carrier, walked down, and hopped on the shuttle (that was full except for one seat, and waiting for me). On the ferry, I met two lovely ladies who gave me some pointers for navigating things. I got off and went about trying to get a taxi....I saw some people climbing out of one, so I asked if he could take me. As I climbed in, I looked up and saw a sign hanging from the rear view mirror which read: I love Jesus.

In LA, after Elijah is in pre-op, they wheel him away for his exam and put an IV in. When he wakes up he is mad and has all kinds of wires everywhere.  Here, they use gas instead of an IV. So I got to go in the exam room (they have an OR decdiated just to retinoblastoma patients). I laid him down and held his hands to his tummy, and they put the gas mask on while I spoke gently to him until he fell asleep. Then I went out of the room until he was done, and the doctor came out and sat with me. We got Ben on speakerphone so that we could both hear what he had to say. It was such a gift. We really value this doctor's time and were so thankful for his opinion in examining Elijah. (We are also so very thankful for the doctors, nurses, and staff at CHLA)!!!

We are just so thankful. Taking one day at a time. And ready to slow down and try to enjoy the return trip a little more, now that we aren't quite so rushed.
Thank you again, to all who have prayed, donated, supported, encouraged and journeyed with us.  It's still kind of the beginning of our road with Elijah's cancer. But we are so thankful to have all of you with us as we walk.

Quick update:

Quick update: this is a whirlwind! They are going to see Elijah today for an exam under anesthesia. It's pretty soon after his last exam and laser treatment. But it will either:
1. Give us some peace of mind since the last tumor was so aggressive....
Or 2. Show that he does need the chemo and we won't have to wait the full two weeks.

Lots of details, but that is the Reader's Digest version. Gotta feed Elijah one last time since he'll be under anesthesia this afternoon, then get back into the city! Ben and the kids will hang at the hotel.

When God says "No"

Oh. It is so hard when you are praying fervently for something, especially something you think is right, or necessary, and God says no.

But I think about my own kids, and when I say no to them-their tendency is to believe that either I'm keeping something good from them, or that I don't love them.

That tendancy is hard to fight, even as an adult. Last night, we made it to New York, only to find that even with everything lined up for Elijah, our insurance did not approve the chemosurgery procedure in time to go forward. This just means that most likely, we will have to postpone until the end of the month, and I will fly back with Elijah.

But we found ourselves heartbroken over Elijah's situation, without approval and the ability to treat him at this time (which is why we are in NY!), and without a place to stay.  In those dark moments...well. Everyone is different. I wish I could say that I handled it with the utmost joy and grace. But instead, I cried.

My 10 year old boy said, "Mom, this reminds me of some verses in Luke 12." Off the top of his head. He gets out his Bible and reads:

Then, turning to his disciples, Jesus said, “That is why I tell you not to worry about everyday life—whether you have enough food to eat or enough clothes to wear. For life is more than food, and your body more than clothing. Look at the ravens. They don’t plant or harvest or store food in barns, for God feeds them. And you are far more valuable to him than any birds! Can all your worries add a single moment to your life? And if worry can’t accomplish a little thing like that, what’s the use of worrying over bigger things? “Look at the lilies and how they grow. They don’t work or make their clothing, yet Solomon in all his glory was not dressed as beautifully as they are. And if God cares so wonderfully for flowers that are here today and thrown into the fire tomorrow, he will certainly care for you. Why do you have so little faith? “And don’t be concerned about what to eat and what to drink. Don’t worry about such things. These things dominate the thoughts of unbelievers all over the world, but your Father already knows your needs. Seek the Kingdom of God above all else, and he will give you everything you need. (Luke 12:22-31 NLT)

And my husband immediately prays, "Lord, how do we seek your kingdom right now? Show us!"

And so. We had hoped that it would all fall into place. But it didn't.  But with every. single. hotel. booked in the city...we headed out and tried to find a room. We ended up in the Stanten Island area. Got food for the kids and crashed.

Today is a new day. It didn't go how I wanted or how I hoped. But here is the moment where my loving Father has seemingly said "no." And here is the part where we must believe that He is not keeping something good from us or being unloving. We must believe that He is with us and for us. He cares for Elijah!! So, either the treatment will be at another time (the end of this month?), or maybe God has something else in mind. 
I honestly don't know. But my job today...is to bask in the love of my Father, and to try and live in a way that shows my kids that God's love NEVER fails, even when He says "No."

Elijah's exam and prosthetic

Such a sweet and happy guy!!! On Wednesday last week, Elijah got his new prosthetic eye!!!  They did such a great job and we are so thankful. It took some getting used to. But it has been so fun to take him out and have people ooh and ahh over how cute he is, without even noticing a real difference.

Wednesday night I stayed down in LA, because Elijah had his exam the following morning at CHLA (Children's).  I woke Elijah at 4am for his last feeding (it's the last time he can eat before anesthesia). We checked in at 6am, then went back to pre-op about 7:30am. A sweet friend of mine, who is a nurse at CHLA, got off work at 7:30am. She came up to visit, and as they wheeled Elijah back, we were able to pray and chat. As she left, I just needed to wait for the doctor-but I realized that while a normal exam took about 30-40 min., it had already been 60. That's intersting. So I texted Ben to be praying!!  After 90 minutes, they told me Elijah was in recovery. I went to nurse him-he is always very upset after waking from the anesthesia.

The doctor came in and told me-they found 3 new tumors in his remaining eye.  Normally, they would treat with chemo, but they don't want to do chemo on a child under 6 mos. They treated them with laser, but it only has a 50/50 shot of working. Also, they have to be careful with laser treatments that they don't damage vision. He does have correctable vision in his remaining eye, so we would like to preserve that. If the laser treatments don't work, then they will have to do chemo.

We are continuing to pursue alternative methods, including a focused chemo which delivers the medicine directly to his eye rather than his whole body.  

The presence of tumors in his other eye also mean he has a specific genetic mutation-one that is present throughout his whole body. It is very likely, "inevitable" in the medical world, that he will end up with a secondary cancer (bone cancer being the most common).  For now, we just take what is before us and want to get Elijah the best care possible with the least amount of side effects.

We got the news about the new tumors Thursday, Friday I spent most of the day on the phone and emailing with New York, where they do this specialized chemo treatment. The doctor saw Elijah's pictures and said he wanted to see him Tuesday or Wednesday. The soonest we could be ready for an exam in NY was Wednesday. So we had a tentative schedule for the exam Wednesday, with the chemo procedure Thursday-all pending insurance approval.

So we did what any crazy family of 9 would do. We packed up, loaded our van, and headed to New York.