Home Sweet Home

Well. I was able to switch my flight after all! So I flew home Wednesday, and hit the ground running. Ben was back at work, there was grocery shopping to be done, and life just keeps going. By God's grace, even with the fastest turn around I've ever done....I am doing okay! I was able to get some stuff done. Everyone who is praying and thinking of us: THANK YOU. There is NO way I should even be functioning right now. And yet, it has really, truly been wonderful. I'm so thankful for the good news of this last trip, I'm looking forward to five weeks with the kids before I return, and I'm doing my best to soak up every second with them. 

Now. After a wonderful day, I'm ready to close my eyes, and admit that I am a mere human in need of rest, in the hands of the God who does not sleep or slumber.

A Giant Leap for today....

Elijah did great last night! He went to bed around 10pm, got up at 1:45am to nurse, and then slept until about 4:45am. We decided to go ahead and get up and start walking. :-)

We walked the streets of NY until we could head to the hospital.  

Elijah had been waking up at night, screaming and thrashing. He was pretty inconsolable.  I finally mentioned it to his nurse, so she had me meet with the anesthesiologist before Elijah's exam. We agreed to try a new "cocktail" and see if it helps him.

The last visit, they had told us to plan on doing two rounds of Intra-arterial chemotherapy.  When the doc came in he said that his tumor from last time was gone!!!! (Now, that means they can't measure it....there could still be live cells, but only time will tell.). Because of the great response, they gave us the option of doing another round of IAC, or doing nothing.  The doctor did explain that we've done this before-one round of IAC, then ended up having to laser most months until finally coming back to IAC.  He said that we don't usually get away with just one round....which is what we have done this time.  But when I asked him what he would do, he said, "I'd probably do nothing."

So with joy, Ben and I have decided on no treatment this time.  We will wait and see, knowing that there is a good chance there could be regrowth in the future.  And, if we get to this point again, we will be committing to at least two rounds of IAC.  But I just felt strongly that his little system could use a break, and since the tumor *seems* to have died, then I feel comfortable waiting and seeing what happens.  

We come back in 6 weeks!!!! I'm freaking out! This is awesome!

AND! He woke up from anesthesia so much better this time!!!  We will see if it helps with the night terrors, but I am so thankful!!!!! :-)

We made it!!!!

I'll admit, I was a little nervous about a nonstop flight, because....what if that meant nonstop crying for 5 and a half hours????

And, it had some moments.  :-). But overall I consider it a fantastic success and I LOVED the nonstop flight. We even landed almost an hour early. So it was very similar to one leg of our normal flight, only I didn't have to do the whole thing all over again!

A longer drive into Manhattan from Newark--but Elijah seems to do better in the car than the plane. And what a treat to get to the RMH before 3pm!!!!

Thank you everyone, for praying!!! We are so thankful and so hungry! Time for a "snack." :-)

Waiting to board....

Here is Mr. Grumpy, enjoying some yummy bran muffin while we wait to board our flight.

This is our first time flying a direct flight into Newark. 

Although he looks pretty happy in the picture, he's already been quite the handful and we haven't even boarded the plane.  Thank you to everyone who is praying for us!!!!! 

Psalm 8

https://soundcloud.com/user-450515923/psalm-8-at-ccsb-the-well

This is the audio from when I recently taught on Psalm 8. It requires a free account with soundcloud, but was the best way to upload such a *large* file.

If you're watching "The Truth About Cancer"....

Well, you might be mad at me for this post.  But it is just the opinion of a momma with a baby with cancer.

I think everyone can agree that cancer is a ruthless, vicious enemy.  And while we all long for a cure for this beast....I have a few issues with the documentary series.

1.  Not all cancers are the same.  So, to lump them all into one boat about "cures" is irresponsible at best.  (I do know that the series will differentiate at some points, but it frequently lumps all cancers together.) There is a big, and I mean HUGE difference between basil cell carcinoma and melanoma.  There is a big difference between pancreatic cancer and breast cancer.  There's a big difference between stage one and stage four.  And don't even get me started on the difference between childhood cancer and adult cancer.

These differences are really important to keep in mind when you are looking at treatments.

2. It is unkind and unfair to lump all doctors into the same category.  Or to lump all conventional treatments into a boat and call it "Big Pharma."  Trust me.  Not only do I personally hate to take medicine of any kind, I will be the first in line to advocate that we need better treatments that are less toxic.  But there is a danger on the line just as great, if not greater, than the poisonous, toxic treatments available.  And that danger is forgetting the enemy we are facing. Denying its dangerous and destructive power.  There is not a mom (whose child has cancer) in the world who doesn't wish that we could downplay the strength of this destroyer, and pacify its verocity with herbs, plants and green juice.  And we all still try them, believe me!!!!!  I have been amazed at the lengths these mommas will go to for their children with cancer. These moms and dads are some of the most educated people on the planet.

And it's not like we aren't aware of the toxicity of the treatments.

But the statement made in episode 2: "Cancer doesn't kill people, the treatments do."

Not only is this an outright lie, but I can only tread lightly as I say that I have seen the scans of a toddler's brain being overtaken by cancer.

But once again here, this is where the difference between childhood cancer and adult cancer has great impact.

Cancer does kill people. This is a fact that we parents of children with cancer can never forget.  And while treatments are toxic and terrible, I can only say for myself that without surgery and chemotherapy, my little boy wouldn't still be here, and he wouldn't be able to see.

And while I am not naive to industry and doctors who are all about money or are quick to prescribe medicine....let me just defend every doctor that has been part of Elijah's care from day one.  They haven't done everything right, they haven't always been on the same page with me...but NOT ONE of them wanted Elijah to have chemo.  They all exhausted every other option first.  No oncologist ever used "scare tactics" on me to try and get us to choose chemotherapy for Elijah. 

So, while the documentary series compares chemotherapy treatment for cancer to "sending in NAPALM to take care of an ant problem"....I have an issue with comparing my child's cancer to an ant problem. This isn't ants we are talking about people.  We have to remember the enemy we are fighting.

I'll leave it at that for now.  I do want to say that I believe there is some good information represented in the series.  I wish that it had been presented differently-with more respect to the doctors who are fighting diligently and searching tirelessly for less toxic treatments. I believe there is a way to advocate natural methods without discrediting the work of so many doctors.  (Calling them uneducated because they don't know "chemotherapy is a huge fraud."). 

I believe that we are to do everything possible to steward our bodies the best that we can.  But I also know that Elijah doesn't have cancer because of his diet, his environment, or because of "treatments" he had gone through.  He has cancer because his genes told his body to reproduce cells uncontrollably with a mutation. And that genetic mutation was lovingly sifted through the hand of my Good God.

And so.  I'm not saying you shouldn't watch The Truth About Cancer.  In fact, I'm watching it. But I'll watch it the same way I would anything of this nature-pen and paper in hand, noting doctors names, hospitals and treatments mentioned, reports cited, etc. And then I pray and research and pray and research some more.  

I'll close this by agreeing with the series:

"We must be educated."

Yes. Amen. 

But that also means you can't just take the word of a guy who has begun with his conclusion in mind.  

And I'll agree with him one more time:

"There are true answers for cancer."

Yes. There are. And every answer begins and ends with Jesus.  There are wonderful things that we can and should do for our bodies to prevent disease.  But there will also be times when you aren't able to prevent it. Like when your baby is born with cancer.  And even then, Jesus is still the answer, and He is still working towards that glorious end when He will make all the wrong things right.

3 year old girl....

Dear Evelyn Hope,

   Oh, my sweet baby girl. There are so many ways in which you have changed me forever.  I was on bed rest almost my entire pregnancy with you.  I think in some ways, it made me appreciate you so much more because I felt like I had to "fight" for your life. And the only way I could fight for your life was by resting and trusting in God.

  Wow. I sure did need that lesson! :-)

     You are so much fun. You are petite, and for the longest time, I didn't think your feet would ever grow.  But they did. Your slender, elegant feet fit beautifully in your ballet slippers.  When we went to see The Nutcracker Ballet at Christmastime, it opened up a world of love in your heart.  I absolutely love watching you dance. You are so fortunate to have an older sister. Someone who has gone before you, who knows more about the hardships of this life....but still dances beautifully.

    You play hard with your brothers too:

     You are very serious about doing your "schoolwork", although you already know your letters and can count...I don't know, at least to 30 but you sometimes leave out one of the teens. :-)

     You are a warrior princess.  I pray that by God's leading, you will learn what battles to fight, and what ones to let go of.  If you find that you are fighting primarily for your own gain, then it is time to rethink the battle. If, however, you find yourself fighting for what is right and true, if you find yourself fighting to keep light and beauty in the world, to take care of those who are not able to stand up for themselves at the time....well then, that is a battle worth fighting.  Not only do I pray that you would learn which battles to fight, but I also pray that you would learn how to fight.  We live in a world that is captivated by light sabers and other weapons.  But this world knows little about the most powerful weapons: the Word of God, held up strong and steady through prayer.  A momma, sister, friend, wife-warrior learns that our struggle is not against flesh and blood. Many times we are so angry and frustrated with a face in front of us.  But be very careful.  While people can be very difficult and frustrating.....there is always more going on than we can see. Behind a hard face and a hard heart is often more pain than we can imagine, and it requires compassion and empathy in order to navigate those relationships gracefully.

     I guess my encouragement for you, my sweet and spicy 3 year old is this:  keep fighting, and keep dancing.  This life is filled with a symphony of songs: some upbeat that will have you whirling and twirling through the most amazing moments you couldn't dare to dream of. And sometimes there will be slow and sorrowful tunes that you didn't expect and don't feel like dancing to anymore.  

     But the secret to the "fight" and to the "dance" is really one and the same: 

Rest in Christ.

Trust in Christ.

     Be looking for the faithful ones who have gone ahead of you. They have danced to songs you haven't heard yet, but they will help you along and teach you some new moves.

     There is no song that will come that Christ has not heard- and yet He turned each note, each melody into an offering of worship to the Father.  If you dance with Jesus, you will please the Father, because the Father is forever pleased with His Son.  As I have clung to Christ, feeling as if I am tossed here and there by the music, I find that He is the best partner.  He never, ever lets go of me.  And He won't let go of you either.

     I love you baby girl.

Your happy birthday train ride at the zoo.

The animal you chose: the scarlet macaw.

Happy birthday, my beautiful ballerina.

With love,

Mommy

Still in shock....

Yesterday was Elijah's blood draw to check his counts since chemo.  They had already warned me that since testing positive for the flu, it could take longer for his counts to recover-so we were even prepared to have his next appointment postponed.  

To give you an idea....an absolute neutrophil count below 1,000 is considered neutropenic. It is more difficult to fight infection when numbers fall below 1,000.  Below 500, and you are at risk for infection just by the normal bacteria that exists in your mouth and gut.

Last time Elijah had intra-arterial chemo, his 10 day counts were below 650.  And a week later, they had dropped below 550.  Just when we were considering shots to help his counts recover, they went up to 900, close enough to 1,000 for him to have his next exam under anesthesia.

So this time, we were prepared for worse. When his counts are low like that, a fever would mean 2 days in the hospital.

Well. After a little bit of confusion on his results....his absolute neutrophil count came back at 2,800.  This is UNREAL.  So crazy that I emailed all of his doctors to make sure this was even possible!!!!

Thank you all for praying! We are just rejoicing in this amazing blessing!!!! :-)

Elijah is pretty stoked on this news. :-)

Late night...

Elijah still hasn't had much of an appetite since his Intra-arterial chemo procedure on Thursday.

I finally went yesterday and got some things to juice for him:

But by the evening, he was running a fever so we were instructed to take him to the ER.  That is one of the frustrating things about Elijah's situation--he has amazing doctor's on both sides of the country, but in a situation like this-is this an issue for the pediatrician? The oncologist?  Elijah is sort of in no man's land.  After calling CHLA, the on call oncologist felt that we should take him to the ER in Ventura.  Since Elijah is seen by a CHLA doctor here in Ventura for blood draws after chemo, we also spoke with him. 

    Now the big question: had Elijah's counts already dropped? Or was he just sick??  

     They took great care of us at the hospital, knowing that Elijah could be immuno-compromised.  We did the various pokes and tests which are so hard on such a strong guy.  He got some IV fluids, but in general, just wanted momma to hold him.

     At the end of it all, we were discharged with good news and bad news.  The good news is that at this point, his white counts look pretty good. (We don't know what they will do from here, but right now we are good shape.). The bad news is that he tested positive for the flu.  Not really a great time to have the flu, since his counts may or may not stay strong.  But the doc will prescribe something to help him recover more quickly from the flu. Hopefully we can get him eating and feeling better soon.

Pressure....

I love the different means that God uses to speak to our hearts.  Since Ben and I ended up staying longer here at RMH, they had an activity going on that we were able to participate in--a half hour massage of the shoulders and back. Perfect timing since tomorrow will be a long day on a plane, carrying a feisty baby. :-)

As we got started, this kind woman began and I realized quickly that when her shirt indicated she was from the Swedish Massage Institute, she was not kidding. :-). The pressure was very firm.  But it was, at the exact same time, gentle.  There were areas that as she pressed in, I knew it would hurt.  But it wouldn't break me.

Right away, I felt the Father speaking to me.  He was telling me that as the Potter, HE shapes the clay. There are places where he "digs in", areas that need more attention, because there is damage and tension that needs to be worked out in order for me to be useful and effective.  There are places and times where I feel the pressure. And it hurts. But it is the years of His tenderness towards me that remind me of His gentleness. He won't break me.

Wednesday night, I felt like I might break. Being away from the kids, knowing Elijah had chemo the next morning, and some difficult moments of communication between Ben and I, were compounded by the worst migraine I have ever had.  Not only was I nauseous in the dark, awake most of the night, but the pain got so bad that I just laid there, crying for an hour or so, before I was able to get in the shower.

All this to say, during those moments of such extreme pressure, I thought I might break.  It was hard to see clearly what the point was to all this while I was in so. much. pain. 

But here I am. Still standing. Still breathing.  When the pressure got that high, the Potter sent others to pray for me (one of course, being my husband, who cried out to the Lord and prayed over me!!).  And a good friend of mine had JUST, that very same day, been sharing with me how in her migraine pain, she used the time to pray. And so I prayed my tail off for everyone I could think of.

I just want to clarify that this isn't supposed to be a testimony to my strength.  It would be a poor one, since I found very little strength in myself at all.  It's more a rambling on the fact that I wasn't sure I was going to make it. I have felt like that a lot this year.

And yet, I'm still here.  And even more than that, we had a really nice day today!!!  It wasn't even just a "getting by" day.  I guess the discovery, and what I hope to communicate is that, God is GENTLE.  He alone knows the pressure we can take (please do not read that sentence as "God never gives us more than we can handle". You ALL know how I feel about that one!). I would have shut it off long ago. But then, it wouldn't have finished its work-conforming me into the image of Jesus.  And I want that.  Even if it takes more pressure to accomplish it.

"Then I went down to the potter's house, and there he was, making something at the wheel.  And the vessel that he made of clay was marred in the hand of the potter; so he made it again into another vessel, as it seemed good to the potter to mark.

'O house of Israel, can I not do with you as this potter?' says the Lord. 'Look, as the clay is in the potter's hand, so are you in My hand, O house of Israel.'"

Jeremiah 18:3-4, 6

"For God knew his people in advance, and he chose them to become like his Son..."  Romans 8:29

Resting

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.

Waiting...

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

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!!!!

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:

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.

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.

He is risen, indeed!!!!

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.

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

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, 

Mommy

Results

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!!!!