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.

FAMILY TRAVEL INFO. 

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. 

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.

Survivor

Elijah in his new onesie! Thank you Auntie Tana!!!!!

Lessons I probably didn't want to learn...but needed to.

Seven weeks ago. Our seventh child. Was seven weeks old.

He was diagnosed with retinoblastoma, a rare childhood cancer of the eye. In order to protect him, his right eye had to be removed. These are some of the lessons I have learned so far on our journey:

1. Even when I walk through the darkest valley, I will not be afraid, for you are close beside me. Your rod and your staff protect and comfort me. (Psalms 23:4 NLT)

From the very beginning, my Father reminded me not to go where He didn't lead me. To not let worry overcome me and carry me places He didn't intend for me to go. There are a million what-if's that I am just not meant to know.  

God didn't cause this or even INTEND for this. But it was lovingly sifted through His hand. He did not allow anything to come to us that He would not walk through with us. And He never, ever allows anything without bold intentions for my good and His glory.

2. ...Therefore, we who have fled to him for refuge can have great confidence as we hold to the hope that lies before us. This hope is a strong and trustworthy anchor for our souls. It leads us through the curtain into God’s inner sanctuary. (Hebrews 6:18-19 NLT)

It's okay to be sad. My hope is secure and it is a strong and trustworthy anchor for my soul. But I have to be careful. Self-pity, and a host of others like it (all the D's: doubt, depression, discouragement), beckon me to come roll around in their mud rather than remaining in the pure water of the Word.

But PRAISE GOD. The blood of Christ and the Word of God have more power to cleanse than any of sin's power to stain.

So I flee to Him for refuge. And Jesus leads me into the inner sanctuary of God.

3. For our present troubles are small and won’t last very long. Yet they produce for us a glory that vastly outweighs them and will last forever! So we don’t look at the troubles we can see now; rather, we fix our gaze on things that cannot be seen. For the things we see now will soon be gone, but the things we cannot see will last forever. (2 Corinthians 4:17-18 NLT)

It is NOT lost on me, that the Elijah of the Bible was known as a SEER!!!!! An Old Testament prophet was given a supernatural ability to see into the things of God. 

So I have prayed that any physical sight lost for Elijah would be returned 100 fold with spiritual sight. And that he would lead our family in this way of thinking and seeing.  It is so easy to be wrapped up in what I can taste and touch and see. And while it is very right for me to be present among these things, the Lord has been trying to teach me for many years that "there is always more going on than what I can see."

Sometimes, it takes having something happen that just cannot be made right in this life, in order to become more fully alive to the next one.

I have always believed in heaven!!! But I have not longed for it in the same way before now.  Until then, I want to be one who sees what is really going on. I want to see into the things of God.  

4. We now have this light shining in our hearts, but we ourselves are like fragile clay jars containing this great treasure. This makes it clear that our great power is from God, not from ourselves. We are pressed on every side by troubles, but we are not crushed. We are perplexed, but not driven to despair. We are hunted down, but never abandoned by God. We get knocked down, but we are not destroyed. Through suffering, our bodies continue to share in the death of Jesus so that the life of Jesus may also be seen in our bodies. (2 Corinthians 4:7-10, NLT)

This is not meaningless. And we were not entrusted with this story because we are so strong and amazing and gifted as story tellers. No. We were entrusted with this story because we are fragile jars of clay. Every crack and break leaves more room for the light of Christ to be shown.  His power is made perfect in my....weakness. And pain gives way to empathy. It becomes like a huge blanket, knit together...a network of those who have suffered. I have more empathy than ever for those who are suffering.  And that blanket, that network, flows from its head...OUR head. We have a Savior who suffered for us. And so I pray, that my brokenness will give way...that others might see the LIGHT of Christ in me. HE is worth beholding.

There are so many more lessons to learn....and I'm sure I'll have to learn even these over again. But my Teacher is strong, steadfast, and gentle. He teaches with patience and sympathy for my hurts.

For we do not have a high priest who is unable to sympathize with our weaknesses, but one who in every respect has been tempted as we are, yet without sin.

Hebrews 4:15

Retinoblastoma Awareness Week

This is one of my favorite pictures of Elijah. He is only a few weeks old. It is also one of the pictures that makes me cry when I'm alone at night.  I look, longingly, at both of his beautiful eyes.  You can't tell that anything is wrong.

I didn't know....and quite honestly, he was diagnosed and treated at 7 weeks old.  We were still getting used to having a new baby!  Elijah's case was particularly rare, since the average age of diagnosis is about 2 years old. 

This week is National Retinoblastoma Awareness week.  If I could encourage two things for every parent it would be:

1. Make sure your child has had a red reflex test-either before leaving the hospital, or at his first visit to the pediatrician.

2. Take photos of your children with flash. Pay attention to the way their pupils respond to the light.

If you as a parent, notice something out of the ordinary, don't dismiss it lightly. 

If you want more information on retinoblastoma, here are some helpful resources:

http://www.retinoblastoma.net/2013_RedReflexTest.html

http://www.daisyfund.org/rb/about/index.html

http://knowtheglow.org/

http://en.m.wikipedia.org/wiki/Retinal_blastoma

Elijah is a bold and brave little guy. I'm not ready to be posting pictures of him just yet....but I am saving up for this onesie for when we are out and about:

Emma Faith, 12 years

Emma Faith....

     I truly am so honored to be your mama. I can hardly believe how quickly the time has passed. I could never have imagined having such a lovely young lady as my daughter.  I can honestly say that it is my pleasure and one of my greatest joys to spend time with you. You have a gentle and quiet spirit, which is so very precious to God. You have the most amazing way with little people, and you are a gifted teacher. You take great delight in beauty. We have a joke that we are "heavy drinkers", because we like tea, coffee, and pretty much anything else fun to drink.  You are wise beyond your years. You know how to laugh and enjoy, and yet make choices in line with your convictions.  Quite honestly, you have become one of my best friends and I am so thankful to the Lord for entrusting such a precious gift to our home. 

    My deepest prayers for you this year are that you would forge habits that would serve you the rest of your life: habits of communing with God, loving and treasuring His Word, casting your cares upon Him, and worshipping Him in all things. I pray for deep and abiding friendships for you-ones that will last and spur you on in your love for Jesus.  I pray that you will discover and really "own" all the ways God has gifted you, that you might use them for His Kingdom and His glory.  Most of all, may you know how very deeply you are loved. You are a Daughter of the King, and you have a place in the Kingdom. May you know and love the voice of your Shepherd. I love you.

For the King,

Mommy

"For this reason I bow my knees to the Father of our Lord Jesus Christ...

that He would grant you, according to the riches of His glory, to be strengthened with might through His Spirit in the inner man, that Christ may dwell in your hearts through faith; that you, being rooted and grounded in love, may be able to comprehend with all the saints what is the width and length and depth and height— to know the love of Christ which passes knowledge; that you may be filled with all the fullness of God. Now to Him who is able to do exceedingly abundantly above all that we ask or think, according to the power that works in us, to Him be glory in the church by Christ Jesus to all generations, forever and ever. Amen." (Ephesians 3:14, 16-21 NKJV)

Ambree's Post....

A few years ago, this beautiful, shy, amazing young woman came into our lives. The Lord clearly identified her to me as someone who would be very special in our lives....and she is!!! Since that time, Ambree Shea has become more and more a part of our family. We have had many adventures, many awkward family moments, and lots of family reading time. :)

There really aren't words to express how dear she is to us. But these past few months....well. Let's just say that the Lord knew we needed her. Through Elijah's birth, to investing in Ben and my marriage through date nights, and of course....through Elijah's appointments and treatment at CHLA. Ambree, you have served our family in ways that I can barely express gratitude for except to say: thank you. From the depths of my heart...thank you. I love you so deeply and I am so honored to have you as part of our life. Happy 18th birthday to a fine young woman. You are a gift from above and I cannot wait to see how you change the world and shape God's Kingdom. I love you.

First of many....

Elijah had his first outpatient eye exam this past week. I decided to bring Emma with me since her birthday is coming up and it would give us a chance to spend some time together, as well as allow her to see Children's Hospital (CHLA).

Emma, Elijah and I set out on Wednesday afternoon. We would be staying at the Ronald McDonald house since we did not have an exact time for the eye exam on Thursday.

Wednesday afternoon the hospital called to say that we were first in the line up since Elijah is the youngest patient.  I was to wake him at 4am for his last feeding, and we needed to check in at pre-op by 6am.

We stopped at BJ's Restaurant for a yummy dinner:

And then arrived at 7:45pm to check-in (you have to check in by 8pm!!).

We got checked in and settled, and got to bed by about 9:30pm.

Just after midnight, we were awakened by a LOUD noise accompanied by flashing BRIGHT lights.  The fire alarm!  We rushed to get shoes on, I grabbed Elijah, and out to the street we went.

Fortunately, it was a false alarm. Out in the street, I saw a woman and her daughter that I had met previously in the hematology/oncology department. The 14 year old girl has a reoccurrence of brain cancer. She is a sweet young lady who seemed to really enjoy Emma. 

We finally got back to the room and got everyone settled in. Soon it was time for me to feed Elijah, and then time for us to get up for the day. Emma, Elijah and I headed out and walked into the hospital just after 5:30am.

After Elijah was checked in, we were told that his exam wouldn't actually begin until 8:30am. I told Emma that you do a lot of waiting at the hospital.

They finally took Elijah back and Emma and I looked at the food magazines I had purchased just for the trip. We had Cliff bar snacks as well, since we didn't have any breakfast.  

Dr. Kim came in and said that Elijah's left eye looked great!!!! No tumors!!!!!

They had a hard time getting enough blood for the genetic testing-but hopefully it was enough. The genetic testing will determine his exam schedule. If the test is positive, he will have these exams (considered outpatient surgery, so the copays add up FAST!) every 4-6 weeks until he is 3 years old.

If the genetic test is negative, I believe his exams will be every 4-6 weeks for the first year, then they will slow down.

After recovery...

...we decided it was time to eat! We found a great little place in walking distance and enjoyed an amazing breakfast:

We are so thankful for the good news from Elijah's first exam-the first of many. :)

The Dark of Night

I feel like I've done pretty well staying away from the what-if's... I try to discipline my mind and stick to what is true and in front of me.

But Tuesday night, the night Ezra was admitted at CHLA, was a dark night. We were pretty exhausted. I had already been running around with all kinds of appointments, and all I had to go on was:

Ezra's lymph nodes were REALLY swollen

He didn't have a high fever of any kind, or a sore throat at all (which would normally be present with a bacterial OR a viral infection)

His lumps didn't hurt and weren't tender

We hadn't been around cats or any other animals for that matter

No one else in our home was showing any symptoms of sickness

Six days of antibiotics had made no difference

It probably didn't help that at the emergency room check in station, they asked, "So why is he here?" 

And as I turned to show them his neck they all said in shock, "Oh!"

And then, the nurse brought in a nursing student and said, "Is it okay if she comes and feels his lymph nodes? We don't really see this very often...."

And, I know I am not a radiologist, but I saw the CT scan pictures and all I could see was his neck and then two or three white masses...with no one to interpret for me.

So, as I finally laid my head down on the pillow that night, the temptation came. "What if I have two kids with cancer?  Is that even possible??"

I literally had to sit there and tell myself: you can NOT diagnose lymphoma with a CT scan.  I know this. I read this. So, those white spots cannot automatically mean anything super bad....

It's funny how things seem more scary in the night. That night was the hardest moment so far. That was definitely an "I can't do this moment."  But. There are some times, some moments, when all you can do is hang on. You can't fathom what is on the other side of it all, and you don't even know if you'll make it to the other side. But you hang on.

I had been hanging on. But that night, the Lord reminded me that even when I am empty, and I don't think I can hang on for one more second....

Well. Even then, He is hanging on to me.

"Weeping may endure for a night, But joy comes in the morning." (Psalms 30:5 NKJV)

Ezra, by the way, is doing much better and on his way back to his "usual" self.;-)

Evelyn Hope....

Dear Evelyn,

     Happy birthday, my sweet girl! My, how you have turned the whole house upside down with your sweet and your spice.  You are talking SO much.  Today, we celebrated your birthday with:

Homemade (ish) donuts

Fun at the zoo:

And dinner at Grandma and Grandpa's:

     At two years old, you speak in mostly sentences....although I don't always catch every word. 

     You are pretty vocal about your likes and dislikes. 

     You love books already, and you even love looking at your "Bible."  You prefer to "hold hand" when we pray, even at dinner time.

     Your name, Evelyn Hope, means "long-awaited hope." We waited for you, for quite some time (especially Emma-it took her 10 years to get a sister!). There is so, so much joy in having another girl in our home. But I think this year, your name is more meaningful than ever. There is a hope that is truer and greater than any we will ever know on this earth. It is the hope of heaven, of being with our Savior, face to face with the Father, fullness of joy, healing of hurts and hearts and bodies and souls....no more death, no more cancer, no more crying.  Oh Evie...it is my prayer that you would know this hope, and that you would cling to it. I pray that you would know the Rescuer who created you, and that your joy would find it's completeness in Him. Dance, laugh, and sing baby girl....and do it all as one who knows the Hope she has no matter what hard things come.  Our Hope is sure, and it is worth the wait.

Love always,

Mommy

"Once you were alienated from God and were enemies in your minds because of your evil behavior. But now he has reconciled you by Christ’s physical body through death to present you holy in his sight, without blemish and free from accusation— if you continue in your faith, established and firm, and do not move from the hope held out in the gospel..."(Colossians 1:21-23 NIV)

Busy Days: Easter, Ezra, and an Update on Elijah

"It was a great responsibility taking care of so many ducklings, and it kept them very busy." 

-a favorite quote of mine by Robert McCloskey

Easter was wonderful. We read "Amon's Adventure" (a great resource to read in preparation for Easter; a cousin of the Jotham's Journey Christmas series), we did our Passover Seder (although I'm quite sure that our version isn't exactly authentic.....), and had a wonderful lunch with family.

Tuesday....we were admitted to Children's Hospital in LA for the second time in three weeks. This time, it was for Ezra.  When people ask why, we say "swollen and infected lymph nodes."  A picture is worth more than words here-we aren't talking the swollen glands when you're sick type of deal:

We had already taken Ezra to the pediatrician and he had been on antibiotics for...five days. They referred him to an ENT (Ear, Nose, Throat specialist) who switched his antibiotic and ordered a CT scan. The ENT said if was doing poorly, to bring him in.

I had outpatient appointments scheduled for Elijah at CHLA on Tuesday and Wednesday and was scheduled to stay at the Ronald McDonald house.  I left early Tuesday morning and headed down. By the time I pulled into the parking garage, I had a text from Ambree saying that Ezra had a fever of 101.1 and was just laying on the couch.

(He had been having low grade fevers each day, but not all day, and never had he broken 101. Since this was the sixth day of fever, it was higher, and he was on antibiotics....) Ben and I decided we needed to bring him in. And, since I was already at CHLA, we really felt it would be the best place for him if he needed special care.

Now, they didn't say this....but look at the pictures. I think everyone figured we needed to rule out lymphoma. The swollen nodes were not responding to antibiotics, and the low grade persistent fever was troubling as well.  Ben brought Ezra and we checked in at the ER. And then waited. A lot. 

We ended up waiting in the same chairs we had waited in outside Elijah's MRI. The same chairs where they told us about his tumor.

Anyhow. Ben was going to grab good for us, but when we checked with the nurses station they told us that Ezra would be next and that they didn't want him to eat.

Bottom line....after two nights in the hospital, they are not entirely sure what's going on. Ezra has tested negative for strep and mono.  However, a later test showed up positive for mono. (Which is a virus!). However, they still have him on some pretty strong antibiotics.

The CT Scan didn't show any abscesses, so that is good. (It did show one of his lymph nodes to be 5cm!! That's big!!)

So basically, he is to continue on the antibiotics and we will check back on him in 10 days to see if any of the swelling has gone down in his lymph nodes. 

Now, at this point, I would probably still have been pretty concerned about Ezra and the possibility of Lymphoma. However, the night before we were discharged, Ben (who had gone home Wednesday to be with the kids and go to work) texted me a picture of Emma, who felt like her neck was swelling a bit. On one side. And it was! Now, it didn't look like Ezra's! But it was enough to make me think virus-since before this, no one else had been sick. Emma doesn't really have any other symptoms...

And Ezra is behaving pretty close to normal.

So for now....we are excited to be home and thankful for Ezra feeling pretty well. We will keep our eyes on him....but we usually do. ;-p

And ELIJAH!!! He saw Dr. Kim, who said the healing of his eye is going well. He has a silicone implant in his socket, and will be fit for a prosthetic eye in about a month.

As he was literally walking out the door of the exam room, he popped his head back in and said, "I JUST got the pathology report back. Give me a minute."

This is totally an answer to prayer, as we were really hoping to have the pathology report back. AND. It was favorable!!! Meaning, the cancer cells were contained in the eye that was removed and he DOES NOT NEED CHEMO!!!!!! YAY!!!!!!

Luckily, Ben was there Wednesday morning so that I could take Elijah to his other appointment. Blood draw. Then we met with the hematology/oncology doctor.  I almost could have just thought that something traumatic happened to Elijah's eye....except that the follow-up visits to this department remind me that it is cancer we were/are dealing with.

Because of Elijah's age and the rapid growth of the tumor, his eye is at much higher risk for developing tumors. He will have exams every 4-6 weeks to make sure no tumors develop.

The genetic testing won't come back for two months. It will tell us if he is "at risk" for other cancers. If he does have the gene, he has a 50% chance of passing retinoblastoma on to his offspring. (So we are praying he doesn't!!!)

It has been some busy days.

We are SO thankful to be home, with ALL of our little people. Lots of appointments ahead. But we will just take one day at a time. :-)

Thank you all SO much for praying!!!  

The Whirlwind, The Fire, and the Still, Small Voice: Elijah's Story

Sometimes life goes at a pace such as though you feel you can barely keep up!

In the 8 weeks of Elijah's life, they suspected a heart murmur (which turned out to be normal!), my tooth infection returned and I had to have oral surgery, and Caleb knocked out his front (adult, permanent) tooth.  Between all the appointments, we were all just sort of hanging on one day at a time....

I remember when Elijah was 2 weeks old, standing in a room with his pediatrician, telling him, "He doesn't seem to be making eye contact. He isn't tracking even small movements..." The pediatrician assured me that this was normal for his age. And it may be. But it didn't seem normal for our kids.  It was then that we began to be mildly concerned that Elijah couldn't see.

When Elijah was about 3-4 weeks old, Ben noticed that at a certain angle of light, it seemed as if he could look into Elijah's eye.  He thought it was pretty cool! In the next couple of weeks, the kids and I noticed it as well, and we seemed to be able to notice it more frequently.  I began to research everything I could, but wasn't coming up with much. I did, however, see an interesting article about how pictures of your child with flash photography can warn you of some very dangerous conditions. So, just before his 7th week of life, I took pictures of Elijah with flash. Immediately, we saw that while his left eye showed "red eye" (which means that the retina was reflecting light unobstructed), the right eye was not.

We made an appointment with our pediatrician, and they squeezed us in with a doctor we hadn't seen before. It was about a five minute appointment-as soon as I reported the flash photography findings, she said she would be referring us to an opthalmologist.  They gave me a card for a place in Ventura-they would get us in in a few weeks. There was a definite sense of urgency so I pushed for him to be seen sooner. The best they could do was a week out, but the receptionist almost casually mentioned, "We don't actually have a pediatric opthalmologist....just an opthalmologist who sees kids. She is only in once a week."  I made the appointment, but got to work that evening looking up all pediatric opthalmologists within a 100 mile radius who were providers for our insurance. When Children's Hospital L.A. came up, I knew it was the right place. They even had a vision center!! I started the process of getting a referral and an appointment.

At this point, I realized that my research wasn't leading me anywhere. I thought, "Maybe the way I'm describing things is not how other people would describe them?" I kept reading things about "the glow."  These articles would reference mainly two causes of a whitish-yellow appearance to the eye. One was Coat's Disease (a rare situation in which leaking blood vessels cause the retina to detach), and a very rare childhood cancer called Retinoblastoma.

We were scheduled for an appointment at Children's Hospital, and now we just needed to wait. :) During that week, we felt that the situation was getting worse, fairly quickly. Thursday evening of Elijah's 7th week of life, the flash photography pictures now showed one eye reflecting red, and one eye showing whitish-yellow. This looked more like the "glow" I had read about. I also noticed what seemed to be some "bulging" of that right eye-as if there was more pressure there.

(I realize this is not a flattering picture of Elijah-but it was the best I got with the flash and the "glow").

On the way to our homeschool co-op on Friday, I let my mind drift on the drive down. Should I push for Elijah to be seen? What if this was really serious??

Almost instantly, the Lord brought to mind a familiar passage:

            "Yea, though I walk through the valley of the shadow of death, I will fear no evil; for You are with me..."

                                      Psalm 23:4

Clearly, the still small voice of the Lord cautioned me: Do NOT go down any dark valleys that I have not called you to. IF I call you to walk down a dark valley, I will go with you. But if you walk down valleys of worry and fear, I am not there because I have not led you there!

Quickly, I was able to just worship and rest, and enjoy our day at co-op, although I did ask for prayer. And my prayer request was quite clear, although it didn't really make sense at the time: Please pray that Ben and I will have wisdom to make decisions on Elijah's behalf.

(This is what we were seeing in Elijah's eye. It was like we could see into it. But it wasn't like this all the time. It was only in certain light or angles. This is in the ER with his pupils dilated)

Before I headed home, Ben and I had a brief exchange about possibly taking Elijah down to Children's Hospital Emergency Room.  We decided to think about it.  As I drove home, the Lord literally played out in my mind the coming events. I knew we would head down to Children's. I knew my mom was going to come and watch the kids, and then Ambree would come and relieve her and stay with the kids. I knew I needed to come home and pack a bag.  As I came home, I called the Vision Center at Children's, and they confirmed that I should bring him in. And then, it was literally as if I just walked in the steps that were already laid out for me. Call Ben. Pack a bag. Call my mom. Call Ambree. Feed the baby. And GO!

We were quickly seen at the ER, and told we were being admitted to the hospital. Looking back, there were a lot of clues, but we had not been given a diagnosis of any kind....

They told us that Dr. Kim would be doing an eye exam on Elijah the next day (google revealed that Dr. Kim is the Director of the Retinoblastoma program at CHLA). They also said we would be staying on the 4th floor....Oncology (They told us it didn't mean he had cancer).

Saturday, they got Elijah in for an MRI, with an eye exam (both under general anesthesia) to follow.  During the MRI, Ben and I sat outside the room waiting, and then saw Dr. Kim go in. After about 15 minutes he came out and introduced himself.

As he sat down, he said the words we knew, but hoped were not, coming.

This is cancer. (Retinoblastoma)

There is a tumor.

It is very large.

It will be confirmed during the exam, but you should be prepared that we may need to remove his eye.

Deep breaths. Trying to process all that quickly. Elijah came out of anesthesia, and we went back to the room only to head straight to pre-op for his eye exam. They took him in and about 40 minutes later the doctor came out.

They rate tumors from Stage A to Stage E. (E being that the tumor was taking up at least 1/2 of the eye). Elijah's tumor was taking up 2/3 of his right eye.  He did not have any vision in the eye. The doctor said that even two more weeks and the cancer would have spread. But we have a shot to cure him, by taking out the eye.

Within 2 hours of first hearing that this was a tumor, his eye is out.

I broke down in tears....I told Ben, "I don't doubt our decision. I don't doubt God's goodness! But it's still just so sad..."

(He is still so absolutely adorable!!!)

So. Now, we wait. We appreciate your prayers in the days ahead. Here are some specific requests:

Elijah will have genetic testing to determine if the mutation which allowed tumors to grow in his eye are present elsewhere in his body. (We pray it isn't!!!)

Elijah's eye was sent to pathology-this will determine if he needs chemo. (We pray he doesn't!!!)

Elijah's left eye will be watched closely to make sure no tumors develop. (We pray they don't! We are praying for a healthy left eye that will have vision)

And our greatest prayer....is that we, as a family, would walk worthy of the calling we have received. That Christ would be glorified.

Oh Lord, may we fix our eyes on what is unseen....because that is what is eternal and lasting.

Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal. (2 Corinthians 4:16-18 NIV)

Judah Sean

Dear Judah,

     Today, you are four years old!!!! You are so fun and cuddly (you remind me a lot of your brother Noah). You love making jokes! You love giving kisses!  You only have two volumes: off (when you're asleep) and very LOUD.  You admire your brothers so much, you just love doing what they do.  I recently asked everyone in our family six questions.  These are your answers:

1. What am I interested in? Legos, cookies, schoolwork, math, coloring

2.  What am I good at? Picking up things (not super heavy!), coloring, cleaning up Evie's room.

3. What would I like to learn more about? Pictures of our family, coloring, and treats. (Can you tell they were coloring when I asked them these questions?????)

4. When I grow up, I want to be....a cowboy, a firefighter, a babysitter

5. One big dream I have is: to worship God at church

6. I can help the world by: worshipping God and Jesus, and by killing all the bad guys...

    I can help the church by: helping Jesus

     Judah Sean, it is such a privilege to be your mommy. You are full of life and joy. You are so good at bringing laughter to a room! Oh, I pray that, as you praise and worship God, you would change the world and build God's Kingdom. I pray that your ability to bring joy and laughter to hearts would always point people to the One who rejoices and sings over them. I love you Judah! May you feel loved and special today as we celebrate your fourth birthday!

With love,

Mommy

One month

Elijah Seth.  Today you are one month old. In your one month of life....

They thought you might have a heart murmur, and you had to have an echo done. Everything was normal!!!! (Praise Jesus!)

Daddy and I celebrated 15 years of marriage....

And many other things (the "week of teeth").....this has been a very eventful month.

But in this month you have turned our whole house upside down with LOVE. We are all over the moon, giddy, absolutely in love with you. Every prayer includes thanking God for you. You are such a special gift to our family.

You are so strong. You love to hold your head up. When you are awake, you are very ALERT. 

Oh Elijah. Truly, you were appointed by God, and we love you!!!!!