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“Joel is in the final downward spiral.”  ”There’s no medical hope for him.”  ”There is no cure.”
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And yet, I have stubborn hope.
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No matter how often the enemy’s words punch me in the stomach, knock the wind out of me and cause me to flirt with despair, there is a current that pulls me back into pools of hope.
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His cry, his need, his ability to melt into my side as we sit on the living room recliner, they all remind me that he is still very much here, very much alive, and not dead.
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What is it to contend with the Lord for his life and against the accuser who seeks to destroy him?
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He is the Lord’s.  He is a child of the king, and Jesus loves him. so much. so so much.
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But he is also MY son and I love him SO much.  He’s MY son, Satan.  He is My son you little cockroach.  How far you have fallen to take pleasure in the destruction of sons?  How often your own fear is on display as grand marshall of your genocide parades.  You show your hand far too often to play cards well.  For you hold nothing but jealousy, malice, enmity, hate and death in your hand, and yet, you continue to bluff and bluster, and hiss and howl your empty threats.
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You cannot win and so you maim, and afflict, and accuse.  You cannot steal me from His hand, for I am His.  I will not raise an accusation to the Holy one.  For He is the Lord and made all things.  All things belong to Him, all things were made for Him.  I exist for His pleasure, and you will not have the satisfaction of my destruction.  You will not have the satisfaction of destroying Joel, for He is MY son and I have given Him to the Lord of Lords, to the King of Kings.  How pitiful your empire.  How limited the expanse of your domain, for only the earth is yours.  An infinitesimal blue orb in a sea awash with fire and dust.
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Your heights extend for a little while your depths may be measured by fathom.  You are a minor prince and your little rock world is dying.  You have poisoned it, and you will die in the hollowed caverns of its molten core.  Then you will be thrown into a lake that burns forever and ever.
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I see the reflection of its coal in your fearful eyes.  For that is all that sustains you, the only substance that flows through your cold veins, pure, blue fear.  For there is no life in it.
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Fear is cancer’s preservative, its embalming oil and you oh Satan are fear’s oil salesmen.  A snake, a serpent, a dragon with snuffed out coal on his breath; molting, talons broken from the struggle to free yourself of your own skin.

Daddy here.
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Joel and I stayed at Children’s Hospital last night. Joel was hooked up to the EEG machine again for overnight monitoring. EEG hook up is quite the ordeal as the EEG tech has to glue each of twenty nodes on his head. This is a multi step process that includes, electrode gel, gauze, metal leads, glue and compressed air to dry the glue. As you can imagine, it makes Joel nervous, but he was very brave.
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We stayed up watching movies and playing with the iphone till near midnight. I set an alarm for 5am to see if waking him up would prompt a seizure so that they could measure it and tell us the diagnosis. Joel and I quickly fell back asleep at 5am and I woke at around 7am to Joel experiencing his normal head nodding seizures while tucked in my arms. I marked the start of the seizures on the EEG computer with my little red button and then a few minutes later fell back asleep.
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I woke again to Joels neurologists confirming what we didn’t really want to hear, and that is that Joel does indeed, without question, have infantile spasms. This appears to be a rather serious diagnosis as it is tied to long term developmental delay and damage and requires that we treat as soon as possible.
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The best treatments are fraught with side-effects, but the steroids seem the best place to start. This will involve injecting Joel’s muscles with a strong steroid. We will know within a few weeks if the steroids are having a positive effect. In studies, the Neurologist tells us that this treatment is successful (meaning an end to seizures) in 70% of cases.
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As with every thing that happens to Joel, we found out that Infantile spasms is a rare diagnosis and that Children’s Hospital in Denver only sees around 30 cases a year.
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I just learned that in 40% of infantile spasm cases, the child ends up with some level of mental retardation.  Talking to our Neurologist, I got the sense that Joel could experience that even if the treatment is successful.  Early intervention upon onset and less-severe symptoms seem to give him a better chance of escaping that, but there it is.
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We, as always, covet your prayers. Please pray that Joel escapes severe damage or developmental regression and retardation. That these seizures resolve. That Amy and I are able to spend time together with the boys and safely administer these steroids over the next 4 weeks. That Joel will not exhibit symptoms of high blood sugar levels or blood pressure issues. And that we continue to take ground in the face of yet another enemy assaulting our little boy.
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The plan is to stay in the hospital until Tuesday so that Joel can start meds and arrangements can be made to ship a supply to our house. For now, Joel and I are going to play in the play room.
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-Ryan

We received a call from one of Joel’s nurses this afternoon, while the official report isn’t back, they did call the Pathologist (Doctor who looks at the cells in the spinal fluid)
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The pathologist said that they could find no sign of cancer cells in his fluid!!!
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This is a huge relief for me as we are now almost 3 months out from radiation treatment and almost 4 months out from the palliative chemo (chemo not intended to be curative) and almost 5 months out from when they told us Joel was terminal and then receiving the clear lumbar puncture.
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All this to say that there is no sign of cancer in Joel! Still! Next MRI in two months.
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-Ryan

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no signs of new tumor growth in full brain scan.
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no sign of loose cancerous cells in CSF. 2 1/2 months after first all clear report before we started chemo in nov.
Our Dr sent a message to me through his nurse:
“(He) wanted me to tell you that he feels certain that the nucleated cells in the CSF were reactive cells,
a response to the tumor disappearing.”

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It is difficult to articulate the feelings I have been having over the last 24 hours.  Yesterday, when our Dr walked into the room after giving us the preliminary all clear on Joel’s MRI results, I noticed very quickly that his countenance had changed.  I knew what was coming.  See, before the full evaluation from the pathologist, all our doctor had seen was the  line: “CSF, OTHER CELL   32     %” in the report above.  The report only represents a counted sample of 100 cells.  Obviously many more cells are present on the slide the pathologist reviews, and many many more cells in the fluid that is drawn from Joel’s spine, but 100 represents a good sample.
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A full one third of those cells marked “OTHER”.  He prepared us for the worst.  He said we could do more experimental treatment with clinical trials.  But those aren’t curative.  He could manage the cells in Joel’s spinal fluid with more chemo, once every six weeks.  But that wouldn’t be curative.  The only curative option he gave was what I have decided to call the “Nuclear Option.”
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That is, we could combine treatment.  Give Joel chemo in his spinal column and then radiate Joel’s full head and spine with a very high dose of radiation.  This option COULD be curative, however, they don’t do this to children under three.  They don’t do it because even for the medical community it is too extreme an option for the quality of life it offers to those who have long term survival from their cancer.  It could cripple him physically and cause extreme cognitive damage to his brain.
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After hearing this, my thoughts were.  “Maybe this is something we should consider.”  I argued all good Christian ethical reasons why we should.  I argued that it isn’t my decision to determine the value of a life.  That perhaps his happiness wasn’t the chief end here.  That if we could do anything available we should.  That we would amputate a leg or both his arms or remove his kidneys if it would allow him to live.
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In short, I argued that it is worth severely crippling my son mentally and physically so that I could MAYBE keep him here a little longer.
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And then I wondered.  Is this faith?  Or is this fear of death.  Is this love or is this selfishness.  Is this trust or despair.
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For the first time I felt real empathy for impossible medical decisions and the families making them.  A love for those who would decide to pull the plug.  To do nothing.  To let go.  To believe that heaven waits.
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My wife’s quiet confidence was infuriating to me.  This irrational belief that these 32 cells could possibly be anything but cancerous.  I wish I had heeded her admonition. Because for two hours I made her go there with me.  Into that morass of icky sticky greyness in which I wanted to wallow.  Of justifying my action or inaction as noble and wise and the place of policy and rhetoric and grand philosophy.
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I should have just shut my mouth.
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And listened.
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For that still quiet voice that says.  “Wait.”
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Had I trusted that God would maybe speak to me about what HE thought we should do.  I would have heard the answer to my grand questions and longing of my heart.  I would be able to medidate on His promises.
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In short, I would have been able to enter His rest.
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What damage we can do when we flail.  And yet, in spite of me, we are offered reprieve.
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And for now I can say with confidence that:   “Joel doesn’t have cancer today”  and celebrate.  and cry.  and thank Him.  again.

It is strange to me.  I didn’t feel different after Joel’s primary oncologist came in to deliver the news.  Perhaps I never fully hoped that the battle would be over today.  Perhaps I knew that if we had discovered that Joel was healed through an MRI today it would have seemed anti-climatic in my cinematic day dreams.

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IMAGINED SCENE #1 INT DAY.

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baby boy is hungry because hospital radiation is running 2 hours behind on promised MRI.  Father walks back and forth endlessly in the halls so baby doesn’t freak out.

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Baby is not symptomatic of anything cancer related.  Baby is just really really hungry.

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CHIEF DR

Well,  i’m not sure how to say this, but the lesion that was resident in Joel’s brain has disappeared.  Looks like the chemo did more than we expected.

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DAD

So… there’s no cancer.

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CHIEF DR

Well we still have to wait for the LP results tomorrow.

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DAD

So… there’s no cancer.  Isn’t that a bit “unusual”?

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CHIEF DR

Yes, I would say it’s unusual. So let’s wait for the results tomorrow and come up with a plan from there.

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DAD

Um… Well… Ok, I guess I’ll go give Joel a bottle.

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Of course, I also imagine a more epic scenario would go as follows:

IMAGINED SCENE #2 INT CHURCH NIGHT.

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The congregation is gathered in faith filled expectation of what God will do.  Joel’s Father has invited all the local news stations and the modern prophets of Baal to gather to witness the event.  It is standing room only.

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Father holds Joel and welcomes the prophets of Baal to heal his son.  The prophets wail and dance and cut them selves, but no healing comes.

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FATHER

Maybe your God can’t hear you!  Yell louder, he may be in the bathroom!

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BAAL PROPHETS

WAAAAAIIIIILLLLLL

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Baby is not healed.  Father proceeds to welcome all sick people to sneeze on baby.

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FATHER

Jesus heal this baby!

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Lightening falls from heaven and strikes baby, as the smoke clears, Father pulls tumor from Joel’s nose.

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FATHER

I declare this baby cancer free!!!

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All local news stations carry the event live and thousands are saved.

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SCENE.

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Oh to have faith like Elijah, the lone prophet who could make a spectacle of the power of God by calling down fire from heaven.  Oh if I only had faith like Elijah, then, well then my son would be healed and the world would believe in Jesus.

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But, then I read on and find out that right after Elijah calls this fire from heaven, Jezebel threatens his life, and he runs in fear!

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As I meditate on the scriptures I recall this behavior through the old and new testament time and time again.  God is faithful to perform signs and wonders;  His people forget about it;  His people turn away from him;  God has mercy, helps them, and doesn’t destroy them.  rinse, repeat.

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I have the sense that faith and rest and standing on ground that is solid when your whole world is sinking is not something we conjure through sheer will, it is calm in the storm, because Jesus said “we’re going to the other side of the lake”

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Faith comes through hearing and hearing by the Word of God. And, I think that it comes specifically through REMEMBERING what God said and remembering what God has already done and choosing to look at those things that God has said and done and not the current circumstance.

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Phillipians 4:6 says, “Don’t worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done.”

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Our first night in the hospital two weeks ago, I had finally got Joel to sit in his crib. This, after Joel had been tormented for 5 hours with dehydration, thirst, and constant vomiting.  I was at the end of my rope and so discouraged, feeling like this experience was the beginning of the end, that perhaps this wasn’t just dehydration I was facing but the symptoms of his growing cancer.  Joel had managed to calm down enough for me to place him in his crib, but he was still very upset.   I laid there in the dark desperately praying for his peace when one of the scripture lullabies I play in the hospital started to play.  “Tell God what you need and thank him for all he has done.”

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Suddenly I knew what to do, I started to thank God for his faithfulness, and recounted the things that God had done recently for our family and for Joel, and almost immediately Joel calmed down and fell asleep.  In fact he woke up a few hours later crying for a bottle, drank it, did not throw up, and then fell back asleep.  He did this again at 4am and then 8am and by morning his physical signs of dehydration had disappeared.

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God has been and continues to work small signs and wonders for us every day.  Amy’s gall stone attacks subsiding during prayer, Joel’s tolerance of chemo, his weight gain in the middle of treatment, his lack of nausea, God’s provision financially for us this year, health insurance, our marriage is stronger, our kids are sweet to each other, the body of Christ is standing in prayer united on behalf of our son, God has gathered a cloud of witnesses to see what He will do.

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I have decided to stop trying to come up with a screen play for how I hope it turns out.  Instead, I am going to try and not be anxious, ask God to heal my son, and thank Him for all he has done.

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Jesus, please calm this storm.

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-Ryan

Pastor Blake, asked me to give a testimony of the most recent events with Joel and what we’ve been learning. It starts at about the 15 minute mark. You can drag the progress bar to the 15 minute mark to skip over the beginning of the service if you’d like. Sorry for the advertisements (free service)

Today has been a day of hope. But, before I tell you about our day, I want to tell you about what the mirror reflects when I stand in the light of hope.
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I feel like the following excerpt from a recent email I sent would best illustrate what I’ve been feeling this week as I’ve been seeking the Lord.
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… What I hope to see, and it’s something that I’m starting to see in my own life, is the body of Christ awakened and set apart for kingdom work.
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My reasoning is this. I’ve often told people that I’m almost more fearful of God actually healing Joel than Joel dying.
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What a ridiculous thing to say right? Well consider this. If Joel had been healed during treatment people would praise God but ultimately credit science and chemo and radiation.
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If Joel dies then folks will rightly say that God is good and in control and will give us the grace to get through it.
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But we’re at the end of science now. There is nothing man can do for Joel but try to give him a peaceful exit from this life to the next.
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What if God hears our prayers has mercy on us and gives Joel life, heals his cancer and fixes his eyes! Then what? Our body and the thousands that pray for Joel have a testimony that is beyond anecdotal. It is something we witness with our own eyes.
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In the face of that miracle are we prepared to give testimony of the hope that we have in Christ? Are we in a place of His presence that we will be able to hear His voice and know how to minister to those around us. Will we be walking in the gifts so that those we tell can receive the power of the Holy Spirit and healing through us?
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When given such a sign of the power of the living God, could you or I carry the weight of its Glory? I want to be able to say yes, emphatically, and then “more Lord!”

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Today after returning from the hospital, where Joel received chemo in his spinal fluid, and I received training on handling the IV chemo that we will be administering at home for the next three weeks, we received the following voicemail from our team of nurses and physicians.
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Clear hear to listen to Voicemail from Joel’s Nurse
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So what was my first reaction? To Praise God for answering the way we asked Him to? Nope. I Called our Nurse Practitioner to get the real story. And what I received was “reasoning.” See, Joel’s LP results were CLEAR OF CANCER CELLS this time. Joel HAS NOT received treatment since the results from the first LP 10 days earlier sent us into end-of-life planning and our doctor recommending we sign a “Do not resuscitate” order.
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The reasoning? The sample from the spine is small in volume and it’s possible to get a clear result even if there are still cancer cells in the spinal fluid.
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“But isn’t this just a little bit unusual?” I ask.
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“Yes, it is unusual, but not unheard of.”
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“How unheard of? every month? every year?”
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“I’d say every year”
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So there you have it. It’s unusual. And I find it funny that my first reaction in my head is “It might be God, but they do have a reason”. And then I thought of the Israelites being led out of Egypt. And God performing miracle after miracle, setting up memorials so that His people would remember those things He did for them. He did these things so that His people would know that He is the “Lord their God.”
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And yet, they still forgot. “Pharoah is going to kill us!” He parts the Seas. “We’ll die of thirst!” He turns bitter water sweet. “We’ll starve, at least in Egypt we had meat and bread.” He provides mana from heaven in the morning and quail during the day. “Moses has left us, build an alter and idols to the gods that led us out of Egypt.” Praise God that He didn’t just destroy them all then and there. Praise God that we have a “better covenant” in Christ.
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Church, are you ready for a miracle?
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“24 And the people complained against Moses, saying, “What shall we drink?” 25 So he cried out to the LORD, and the LORD showed him a tree. When he cast it into the waters, the waters were made sweet.
There He made a statute and an ordinance for them, and there He tested them, 26 and said, “If you diligently heed the voice of the LORD your God and do what is right in His sight, give ear to His commandments and keep all His statutes, I will put none of the diseases on you which I have brought on the Egyptians. For I am the LORD who heals you.” – Exodus 15

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“11 In Him you were also circumcised with the circumcision made without hands, by putting off the body of the sins[c] of the flesh, by the circumcision of Christ, 12 buried with Him in baptism, in which you also were raised with Him through faith in the working of God, who raised Him from the dead. 13 And you, being dead in your trespasses and the uncircumcision of your flesh, He has made alive together with Him, having forgiven you all trespasses, 14 having wiped out the handwriting of requirements that was against us, which was contrary to us. And He has taken it out of the way, having nailed it to the cross. 15 Having disarmed principalities and powers, He made a public spectacle of them, triumphing over them in it. ” – Colossians 2

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Lord make a spectacle of Cancer. That is my prayer.

Please pardon the advertisements, this is a free service, so they require ads popup.

Also the first half of the service has weak audio before I discovered my error and fixed it, I’ll get it right next time!

Hey All, Joel hasn’t had a fever since this morning and he’s been mostly happy, laughing and playing this afternoon.  He’s been a little cranky but is also very sleepy and went to bed early tonight.  Please pray his counts recover soon so we don’t have to stay here in the hospital long.

-Ryan