Archive for the ‘ Daddy Update ’ Category

We began the memorial service with worship, and then we shared some of the things that Joel really loved.  If you watched the memorial live you probably weren’t able to see the videos very well, so here they are:

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Joel loved music and he loved to dance.  Even though he was moderately to severely deaf I would often find him dancing along to music I hadn’t even noticed was playing yet.

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Joel loved to eat.  After Joel’s first tumor resection surgery he couldn’t swallow solid food for ten months.  So he chewed things and spit them out, but once he could swallow again he would pack his mouth so full of food, and on more than one occasion his mouth was so full there was no room left to chew, so we had to fish out food with our fingers.  We’ve both been bitten more times than we can count.

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Joel loved dogs.  He loved dogs so much that even though he never bothered to learn how to say Caleb or Isaac, he would learn a new dogs name within five minutes and be calling out “mocha” or “tucker.”  Joel thought sitting in a dog kennell was one of the most entertaining ways to spend an afternoon, and he once fed Pastor Jeff’s dog 30 dog treats in about 15 minutes.

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Joel loved Elijah.  We never let Joel have a dog, but we did get him a baby.  From the moment Joel met Elijah he adored him.  He was as rough on Elijah as he was on puppies but only because he loved him so exuberantly, and I’m pretty sure nothing ever gave Joel more joy than a kiss from Elijah.

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As passionately as Joel loved Elijah, I’m pretty sure Joel’s older brothers loved him more. Caleb and Isaac loved Joel selflessly, they had endless reservoirs of patience and compassion.  They rejoiced over every new accomplishment Joel achieved and made sure to include him in everything.  They doted on him, often stopping whatever they were doing to give him a quick hug or a kiss.  I was always proudest of my family when I watched the way Caleb and Isaac cared for Joel.

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Joel loved water.  For the first year of Joel’s treatment he couldn’t even take a bath because his broviac couldn’t be submerged in water.  As soon as he had a port that could be de-accessed, we took him swimming and he loved it.

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Joel loved horses.  He loved to sign horse.  Whether it was a rocking horse or a real live horse Joel was always ready to ride.  At Chuck E. Cheese or Disneyland it did not matter how many amazing rides awaited, Joel only wanted to ride the carousel again and again.  Just before we left for San Francisco, we took Joel to Hearts and Horses in Loveland, and watching him ride around the arena he was filled with more joy and energy than I had seen in a long time.  We cried as we watched him ride with sheer excitement.  Our family was able to do a lot of amazing things in these last four years, but watching Joel ride that horse is very close to the top of the best experiences in my life.

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Joel melted into his daddy.  There is nowhere on earth Joel felt more content than in his daddy’s arms.  Anyone who knew them, knew that Joel and Ryan had a special relationship, one that I could almost be jealous of, except that how could I be anything but glad that Joel had someone who could comfort him at all times, someone he loved so entirely.  If Ryan left the room for five minutes, Joel’s excitement at his return rivaled any military homecoming I’ve ever seen.  In the last week of Joel’s life I was the most grateful I have ever been that Joel could find a peace in his daddy’s arms that eclipsed any pain or suffering he experienced.  When I saw the way Ryan loved Joel I understood why God calls Himself our Father.  There is not greater love than that.

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Joel loved to laugh.  Joel had an amazing sense of humor.  Since he couldn’t talk, I was always shocked at the way he understood humor.  We took him to a children’s play once and he laughed at every joke, before most of the audience began to laugh, sometimes even catching a joke other people missed.  He thought people falling down was the funniest thing in the world, and almost as soon as he could stand on his own, he learned to “fake fall” to earn the laughter of other people.  No sound I have ever heard compared to the sound of Joel’s laughter.

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Joel’s preschool teachers shared amazing accounts of their relationships with Joel.  (I may type them out or ask them for the files of what they said to copy over at some point.)

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Ryan and I each shared what Joel taught us during his life.  Here is what I said:

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How do I sum up what five years with my beautiful son meant to me?  Raising Joel was a delight.  He was so full of joy.  Every time Ryan and I got heartbreaking news we would tell each other that, you know, if all of this we had gone through was just so three people would be saved and spend eternity in heaven, we would live it all over again.  The truth is, now I’d live it all over again now, just to have him back.  I am not the same person I was when I first sat in the intensive care unit with Joel.

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Joel has taught me to live deeply.  I was used to investing the minimum amount necessary, always afraid of failing, knowing that if at least I hadn’t tried very hard it wouldn’t be much of a loss, if it didn’t work out, but Joel required all of me.  I remember the weeks after we were first told Joel was terminal.  Watching him do something new or unexpected and feeling love well up in me, but only so far.  Suddenly my love for him was a liability.  The  more I loved Joel the more I stood to lose.  For the first time I understood what sacrificial love meant.  Love was not safe.  Love made me vulnerable.  Everything within me urged me to hold back, to protect myself from being even more hurt than I already could be.  After many heart-wrenching months Joel taught me that he was worth loving, he was worth all the pain that my love for him could bring.  I was risking my whole heart, and he was worth the risk.  Eventually loving Joel fully didn’t make my heart ache with the fear of promised pain.

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Loving deeply helped me learn to believe deeply.  I had grown up believing God’s promises were true.  I knew that God meant for us to live powerful lives that displayed His glory, but I had never sacrificed anything to live that life.  Over and over again, Joel’s fight with cancer forced me to decide if I could expect great things from God in the middle of tragic circumstances.  Once again, I knew that my expectation opened me up to the possibility of disappointment.  If I expected very little at least I wouldn’t be let down.

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I’m not sure when I made an active choice to risk my whole heart to trust God, to believe that He had the most glorious outcome possible for Joel.  I think as soon as I stopped protecting myself from loving too deeply, I didn’t want to protect myself from believing too deeply either.  My life became forfeit to God’s plan for Joel.  I wasn’t sure a month ago that I could really walk Joel to eternity, believing the entire time with all of my heart that he would be healed, raised from the dead if necessary.  I wanted to be able to do that, but I wasn’t sure I could face the pain and hold on to hope at the same time.  Then Joel’s eye turned in, and his face drooped, he stopped swallowing, stopped walking, stopped standing, until eventually he stopped smiling, stopped talking, stopped laughing, stopped having facial expressions at all.  All the things I feared were happening before my eyes.  I knew that Joel was dying, and by the time he needed oxygen and pain medicine, it was clear that the moment I had expected for three long terminal years had come.  Joel would have his mighty miracle or be lost to us on earth.  I held nothing back, I fully believed that Joel would be healed, not only healed but fully restored, and grow into a man who lived a powerful life that displayed God’s glory.  The fact that Joel was dying before my eyes only meant we were closer to seeing a miracle than we have ever been, and I know now that I had held nothing back in my belief for that miracle.  I know that I did not protect myself in my pursuit of God and His glory.  I invested everything I have.  I know it because when Joel died I was shocked.  After three years of his being terminal and watching him die before my eyes I was still surprised that he was dead.  We had never made plans for his death, because he really wasn’t going to die.  I had invested my whole heart and God would be faithful.

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Love is not safe.  Believing God is not safe.  I risked everything, and my reward is pain.  Deep pain and anger, more anger than I have ever let myself feel in my life, and this is Joel’s last lesson to me.  Joel, in his delightfulness taught me to love deeply, in Joel’s great need he taught me to believe deeply, and in the emptiness he left behind he is teaching me now to feel deeply, to cry openly, to let myself stay mad, not even trying to explain it away or understand it.  I risked everything and now, I am broken.  As angry as I am, that cancer won when I know that Jesus defeated it at the cross, angry that the victory I was promised never came through, as justified as my anger feels I trust God to heal me. I know God is good, and I know that He loves me and right now I feel like that’s all I know, except for this one other thing, I know that even though Joel has died I don’t regret investing everything I had into this little boy and this big God, because I wouldn’t want to sit in this moment now, composed and not surprised.  I earned this pain it is mine.  I feel it so deeply because I believed God so fully.  I didn’t believe I could be disappointed and I was, but I would rather own my disappointment and confusion than know that I held anything back, protected any part of myself from living as deeply as these last four years invited me to live. I would rather have my heart ripped from chest than to have a heart that didn’t believe that resurrection life was ours for the taking, that it is still our promise and inheritance.  I would rather have my victory unjustly stolen from me, than to think it was never really mine to start with.

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Along the way I discovered that God had strategically placed around us people who were just as fully invested.  It took a dying son for me to learn to live so fully, but somehow all of these people in our church and community were all-in from day one.  More people than I can count have prayed impossible things with us.  We have been given special experiences again and again by people and organizations who never got tired of encouraging us.  Somehow, four years in, no one was done loving us.  Even today when I stand before you unsure of so many things, I have seen God’s faithfulness poured out to overflowing, meeting every need we have, financial, emotional, physical, through people who love deeply, believe deeply and feel deeply.  You have held nothing back in your support of us, and if it weren’t for Joel I would never have known how deeply we could be loved, how faithful God could be, even when I’m angry.

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Here is what Ryan shared:

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Loving Joel has taught me that love isn’t safe.

But love is good.

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Losing Joel is shown me that trusting God isn’t safe.

But trust is good.

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Being Joel’s Daddy has revealed to me that though I could not keep him safe.

My love for him.

My trust in Him.

Was good.

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I want to share with you what it means to me to be an earthly father, with a broken child.

I want to shout at you how much I loved Joel, though he was not able to work for my love.

And I want to show you why Joel’s trust in me, his willingness to abide with me, to melt into my side as we sat for hours and days and weeks with him in my arms, was the greatest joy of my life.

I want to reveal the love of a father to you.

Because it is good.

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I’ve said before that Joel’s brokeness did not cause me to love him less.  It compelled me to love him more.  His inability to talk to me made me want to connect with him in any way that I could find. His inability to walk made want to carry him where ever we went.  His inability to eat caused me to feed him at every meal.  His brokeness did not cause me to reject him.  It stirred up in me a longing to love him, and comfort him; to connect with him and know him.

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I loved Joel, and Joel could do nothing for me.  He could not obey me, or work for me, he could not talk to me, or learn from me, and so all I desired is that he could be with me; In my arms or on my lap.  All I desired was that he would desire to rest beside me so that I could be the one to comfort him, and feed him, and scratch his little arms because he like it, and watch Barney the Dinosaur for the 8th time in so many hours because he wanted it.

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I longed to heal Joel and to see him restored physically and mentally.

I longed to know him, to know his thoughts, fears, and favorite things.

I longed to protect him and have him run to me in times of danger.

I longed to have him imitate me and trade a loud joke and a quiet I love you.

I longed to be his rest.

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I learned from Joel what a good father is.

I learned from Joel the significance of the words

“Our Father who art in heaven”

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Our Father who feeds us our daily bread and living water that we may not hunger or thirst

Our Father who longs to gather us to himself as a hen gathers her chicks.

Our Father who rides in on the clouds with fire in his nostrils to rescue us from those bent on destruction.

Our Father who is our rest.

Who would not spare even his own son, so that He might show us what it means to love and forgive and heal and show grace to our messy broken lives.

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“Our Father who art in heaven”

Abba

Da da

Who prepared a place and an eternity to spend with his son Joel, my son Joel; so that Joel might find rest for his soul, healing for his body, and life eternal, so that Joel’s earthly father, his son Ryan might hold Joel again.

Awake My Joel
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Amy and I did not get much sleep last night. As the hours flew by faster than I could catch them, we prayed, we grieved, I cuddled my sweet son as tightly as I dared, examining his face and hands and toes and belly button, taking pictures of us that I will never show anyone else, and sweeping the hair across his forehead over and over again.
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Joel fell asleep at home. Surrounded by his family and friends, only hours after we had filled our home with songs of worship to our God and prayers for mercy and healing for Joel and for ourselves from the voices of our church and friends and family.
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As I awoke this morning after an hour of sleep, I lingered in the early morning light of our room, his body cradled, as always, in the crook of my arm. Except instead of the sweet sighs of comfort and the warmth of his little body against mine, the moors of death had tightened, leaving Joel’s earthly tent, cold and breathless.
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And so now we mourn, and we weep, we rage and we argue with the God who knows how the story will end. And we laugh with our family and friends, and sob in the quiet moments, and wrap ourselves in his blankets and wrap ourselves in His peace. The kind that passes all understanding as we make the decisions that will lay Joel to rest.
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We continue to contend; For a miracle of Grace; For resurrection life, in this life and the next; for our hope.  Hope that the story of our love for each other and the story of our Father’s love for us, will be more real and more true than it has ever been before.
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With all the fullness of emotion that makes this human experience so utterly beautiful, thank you for your love.
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-Ryan

Joel with his birthday card, March 7, 2014

Joel with his birthday card, March 7, 2014

We’ve received word that our insurance will not be covering a medical flight.  So in order to get home, we’ll need to assume the risk of a commercial flight with Joel and our kids.  The hospital is taking care of arrangements for special oxygen supplies.  Unfortunately, that equipment takes time to acquire and so we’re looking at having it delivered to the hospital tomorrow by noon.  This means we will likely be on a 6:30 evening flight tomorrow night.
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Please play that Joel remains stable, that his lungs are clear, and that he will not need more intervention than we can provide via our lone oxygen tank tomorrow on the flight.
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Of course, most of all we ask that you pray for a creative miracle in the land of the living. One that destroys this monster in his body and restores what it has stolen from our little boy.
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-Ryan

Strep Pneumo (Causing a slight bacterial pneumonia), Flu A Virus, Adeno (Cold) Virus (Possibly causing his red right eye and ear infection).
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Joel’s tested positive for all of them.  They’re sending off a test for pertussis as well.
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He’s been doing well, no new fevers.  If every thing goes well we could be out of here by Friday.
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We’re holding off on Chemo, to preserve what immune system Joel has remaining to fight these viruses and his infection. But holding off should not jeopardize his trial enrollment since these sicknesses are not a result of med intolerance.
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Again, pray things don’t complicate.
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Ryan

Joel started taking a turn for the sicker this evening.  He spiked a fever of 39.5 c (103 f) at one point, face is all flushed, possible ear infection, waiting to hear on the chest x-ray to check for pneumonia.  He’s a pretty sick dude.
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The nurses just gave him some tylenol and he’s getting his third type of IV antibiotic this evening, so they’ve got all those bases covered.
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Joel has fallen back asleep and we’re awaiting transfer to our hospital room upstairs.
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Please pray for quick recovery and that things won’t complicate.
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-Ryan

Joel received his first dose of LEE011 today.  That’s the name of the drug we crack open, dissolve in water and send through is NG tube.  Today’s treatment will be followed by 4 followup blood draws and 4 ekgs to monitor how his body responds to the drug.  As we’ve stated before, this is a stage 1 trial, so the purpose is testing toxicity to the drug more than effectiveness.  Joel is doing well, though it is heartbreaking when he sees food and I have to remind him yet again that I can’t give it to him, not the same way any more.
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I must admit, being here in this chair while Joel sleeps on my chest didn’t seem possible 4 weeks ago as we decided to pursue this course.  There have been many times this last month, when I’ve felt Joel’s miracle is just around the corner.  I don’t think I’ve ever had so much expectation of what God is going to do.  (I usually leave that to Amy.)  But I am reminded daily of how much of a failure I am at predicting the future, and how daily I must choose to rest and to trust that He will never leave nor forsake us, though I don’t have much of a problem these days reminding Him how cool it would be if it was today.
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In the meantime, I’ll enjoy Joel today, and wait until tomorrow to remind Him again.
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-Ryan

“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.

Joe's EEG - Wed July 12thDaddy 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

mriresult01262011.

no signs of new tumor growth in full brain scan.
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pathologyreport01262011

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.