Who, Me?

Another day, another dollar. Not really. Just couldn't come up with anything clever to write.

As of this evening when I left CHO, Logan was breathing well on the BIPAP machine. The neuro team decided to replace his shunt after all --they'd previously decided against it since the pressure in his brain remained low while his drain was clamped over the weekend, but the PICU doc thought it might be a good move and Dr. S said okay. So that'll happen at some point tomorrow. Otherwise, that's about it. He had a flurry of visitors, including a classmate's dad, our pastor and a church member, and the director of the preschool. All good people and I'm glad they stopped in, even if Logan didn't really know they were there.

I can be blunt sometimes, I know. But I don't want anyone to misinterpret my need to disseminate information as me giving up in any way, shape or form. Because we're most definitely not. This is a bump in the road --and a really, really big one at that-- but it's a bump nonetheless. And we continue to say Get Behind Us, Satan. My faith may be grievously imperfect, but God's faithfulness fills in the gaps. That's Good News.

Things

Just a very quick update to say that Logan is not doing well, medically. It crushes me to write that, so I'll be very brief and just say that he's still in the ICU, not particularly with it, and having trouble breathing. His lungs periodically collapse and he de-sats (oxygen level drops suddenly). He was placed on a BIPAP machine this evening, which gives him consistent pressure in the lungs to help keep them inflated. The medical goal at this point is to just get him home again, which looks like it may or may not happen

But of course, we hope for so, so much more. As much as your heart is breaking reading this, mine is breaking thousands of times more. Thank you for continuing to pray for Logan and for our family as we walk through this incredibly dry, painful valley.

On the bright side, today he is 5 and a half. Happy half birthday, Logan. We love you.

The Schedule

After some technical issues this morning and a day at CHO, here's the more-or-less official schedule. I used only the names of those who specifically volunteered to pray (with a few exceptions -- a few of you will find your names listed even though you didn't officially respond --you can thank God for prompting me to include you!). I've doubled up on a number of the timeslots, and of course, I'm still happy to add anyone who wishes to be added. Note that the times listed are technically Pacific, but no worries if you're not exact. I tried to honor time requests, but again, if it's not the perfect time for you, please just pray when you're able. Finally, if you asked to be included but don't see your name, bug me! I made a spreadsheet but there were, as I said, technical problems so names could've been eaten.

How to pray them? Well, I do it in a number of ways. I read them, listen to them (there are recordings of healing scriptures available online) and really reflect on what they mean for us; really chew on them mentally. But there's no right or wrong way to pray over them. It's about reading them, internalizing them and living them. (For my little sweetheart, of course, but also for you!)

The healing scriptures can be found at the bottom of a recent entry. I'm excited about this and am looking forward to seeing GREAT things with my little sunshine.

12 AM Jen S, Amy M
1 AM Alison B
2 AM Russell K, Amy H
3 AM Tracie S, Joni d
4 AM Christie H, Elizabeth D
5 AM Joanne M, Di
6 AM Lara M, Jane J
7 AM Christine R, Diane
8 AM Barbara M, Meg P
9 AM Tara F, Cheryl W
10 AM Becca C, Michelle N, Megan B
11 AM Julie B, Gretchen B
12 PM Fauhn V, Kari J
1 PM Sheila R, Heidi M
2 PM Kathy G
3 PM Michele R
4 PM Christina L
5 PM Erin H, Joelle D
6 PM Kate P, Mariela R
7 PM Kerry A, Dana A
8 PM Janice K, Debbie R
9 PM Bethany B, Irene T, Nancy
10 PM Cindy W, Lisa C, Yoojin L
11 PM Andrea B, Kathie P, Jamie L

Schedule

I've been trying to put together the healing scripture prayer schedule, but it seems like the devil doesn't want me to do it -- lots of technical issues! Until I can get it put together, please do take some time --as you're able-- to reflect and meditate on the verses I posted yesterday. Again, there's power in the Word. Make use of it! Blessings to you this Friday.

Thursday

It's Thursday. The brass tacks: Still in the ICU; on 6 liters of 70% flow oxygen; talking periodically, but it's hard to tell *who* he's talking to since his hearing is awful; given the content of the conversations he has with himself, we can tell he's obsessing over food (eg, my MIL said that overnight he said things like 'no, you have to *slice* the bagel first' and 'are we making chocolate chip cookies?'); is on a diet of purees because he has trouble chewing and swallowing (there's no known reason for this as his scans show NOTHing in that area that should be causing an issue); is fairly hopped up on pain meds; the culture of his CSF never grew anything, so they no longer think it's meningitis but something else they can't identify (nice, right?) in addition to a condition called PRESS (which is high blood pressure-induced swelling (but of course, they don't know why his BP is so high, either). I can tell he's still in there; he's just very uncomfortable and a bit out of it. The breathing thing is confusing the team; they can't figure out why he's having issues but are actively trying to figure it out. Phew. I think that's it for the basics. There's a LOT LOT LOT more I could say, but a lot of it's just static.

Me? After much confirmation, I'm Standing Still. That's right. I'm standing still and resting in God's plentiful promises that He will prosper us --including Logan-- and not harm us --yes, still including Logan. Hard at times? You betcha. But I believe --firmly now-- that God is actively fighting this battle for us and for Logan. My job is to stand here not relying on my OWN wavering measure of faith, but on God's *neverending* faithfulness to us. That's right: God's faithfulnness. The concept's really been hammered into me in recent days; I've been particularly --and repeatedly-- drawn to Hebrews 10:23, which says "Let us hold unswervingly to the hope we profess, for He who promised is faithful". Unswervingly. Not moving at all. With great resistence to temptations and influences that would typically take me down. I find it much easier to exercise FAITH when I believe that the Maker is FAITHFUL. Now that's good news. When He wants me to do things, He tells me, which brings me to my next item.

Over the past few weeks, I've read healing scriptures from the Bible over Logan several times a day. They bring me a lot of comfort and a great sense of peace, and I think --as the Bible says-- that they also bring health to the flesh. So what I'd like to do --what I feel called to do-- is to arrange for a sort of marathon of healing scripture reading for Logan. I know you're not all here to read over him, to physically touch him as you read, but that's okay. If you'd be willing to take part --read and really focus on, absorb, understand, meditate on the list I post below-- let me know either privately or by a comment here, and I'll put together a schedule of sorts. I know that those overnight shifts will be hard to fill, so if I need to take them myself, I will. And I should also clarify that I'm just asking you to pray from wherever you're located. He's in the ICU and has visitor limitations as it is. Plus God knows intentionality when He hears it. :)

I should say something. I'm doing this as an act of obedience because I think God wants me to do it, and not because I think a bunch of us praying and meditating on these verses will force His hand. I DO, however, believe that there's tremendous, earth-shaking power in the Word. So let's put it to use.
**********

Exodus 23:25
Worship the LORD your God, and his blessing will be on your food and water. I will take away sickness from among you.

Deuteronomy 30:19-20
This day I call heaven and earth as witnesses against you that I have set before you life and death, blessings and curses. Now choose life, so that you and your children may live and that you may love the LORD your God, listen to his voice, and hold fast to him. For the LORD is your life, and he will give you many years in the land he swore to give to your fathers, Abraham, Isaac and Jacob.

I Kings 8:56
Praise be to the LORD, who has given rest to his people Israel just as he promised. Not one word has failed of all the good promises he gave through his servant Moses.

Psalm 91:16
With long life will I satisfy him and show him my salvation.

Psalm 103:3
Praise the LORD, O my soul, and forget not all his benefits--who forgives all your sins and heals all your diseases.

Psalm 107:20
He sent forth his word and healed them; he rescued them from the grave.

Psalm 118:17
I will not die but live, and will proclaim what the LORD has done.

Proverbs 4:20-23
My son, pay attention to what I say; listen closely to my words. Do not let them out of your sight, keep them within your heart; for they are life to those who find them and health to a man's whole body.

Isaiah 41:10
So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.

Isaiah 53:4-5
Surely he took up our infirmities and carried our sorrows, yet we considered him stricken by God, smitten by him, and afflicted. But he was pierced for our transgressions, he was crushed for our iniquities; the punishment that brought us peace was upon him, and by his wounds we are healed.

Jeremiah 1:12
The LORD said to me, "You have seen correctly, for I am watching to see that my word is fulfilled."

Jeremiah 30:17
But I will restore you to health and heal your wounds,' declares the LORD, `because you are called an outcast, Zion for whom no one cares.'

Joel 3:10
Beat your plowshares into swords and your pruning hooks into spears. Let the weakling say, `I am strong!`

Nahum 1:9
Whatever they plot against the LORD he will bring to an end; trouble will not come a second time.


Matthew 8:2-3
A man with leprosy came and knelt before him and said, "Lord, if you are willing, you can make me clean." Jesus reached out his hand and touched the man. "I am willing," he said. "Be clean!" Immediately he was cured of his leprosy.

Matthew 8:17
This was to fulfill what was spoken through the prophet Isaiah: "He took up our infirmities and carried our diseases."

Matthew 18:18-19
"I tell you the truth, whatever you bind on earth will be bound in heaven, and whatever you loose on earth will be loosed in heaven. "Again, I tell you that if two of you on earth agree about anything you ask for, it will be done for you by my Father in heaven.

Matthew 21:21
Jesus replied, "I tell you the truth, if you have faith and do not doubt, not only can you do what was done to the fig tree, but also you can say to this mountain, `Go, throw yourself into the sea,' and it will be done.

Mark 11:23-24
"I tell you the truth, if anyone says to this mountain, `Go, throw yourself into the sea,' and does not doubt in his heart but believes that what he says will happen, it will be done for him. Therefore I tell you, whatever you ask for in prayer, believe that you have received it, and it will be yours.

Mark 16:17-18
And these signs will accompany those who believe: In my name they will drive out demons; they will speak in new tongues; they will pick up snakes with their hands; and when they drink deadly poison, it will not hurt them at all; they will place their hands on sick people, and they will get well."

John 10:10
The thief comes only to steal and kill and destroy; I have come that they may have life, and have it to the full.

Romans 4:17-21
Against all hope, Abraham in hope believed and so became the father of many nations, just as it had been said to him, "So shall your offspring be." Without weakening in his faith, he faced the fact that his body was as good as dead--since he was about a hundred years old--and that Sarah's womb was also dead. Yet he did not waver through unbelief regarding the promise of God, but was strengthened in his faith and gave glory to God, being fully persuaded that God had power to do what he had promised.

Romans 8:11
And if the Spirit of him who raised Jesus from the dead is living in you, he who raised Christ from the dead will also give life to your mortal bodies through his Spirit, who lives in you.

II Corinthians 10:4-5
The weapons we fight with are not the weapons of the world. On the contrary, they have divine power to demolish strongholds. We demolish arguments and every pretension that sets itself up against the knowledge of God, and we take captive every thought to make it obedient to Christ.

Galatians 3:13-14
Christ redeemed us from the curse of the law by becoming a curse for us, for it is written: "Cursed is everyone who is hung on a tree." He redeemed us in order that the blessing given to Abraham might come to the Gentiles through Christ Jesus, so that by faith we might receive the promise of the Spirit.

Ephesians 6:10-17
Finally, be strong in the Lord and in his mighty power. Put on the full armor of God so that you can take your stand against the devil's schemes. For our struggle is not against flesh and blood, but against the rulers, against the authorities, against the powers of this dark world and against the spiritual forces of evil in the heavenly realms. Therefore put on the full armor of God, so that when the day of evil comes, you may be able to stand your ground, and after you have done everything, to stand. Stand firm then, with the belt of truth buckled around your waist, with the breastplate of righteousness in place, and with your feet fitted with the readiness that comes from the gospel of peace. In addition to all this, take up the shield of faith, with which you can extinguish all the flaming arrows of the evil one. Take the helmet of salvation and the sword of the Spirit, which is the word of God.

Philippians 2:13
...for it is God who works in you to will and to act according to his good purpose.

Philippians 4:6-7
Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.

II Timothy 1:7
For God did not give us a spirit of timidity, but a spirit of power, of love and of self-discipline.

Hebrews 10:23
Let us hold unswervingly to the hope we profess, for he who promised is faithful.

Hebrews 10:35
So do not throw away your confidence; it will be richly rewarded.

Hebrews 11:11
By faith Abraham, even though he was past age--and Sarah herself was barren--was enabled to become a father because he considered him faithful who had made the promise.

Hebrews 13:8
Jesus Christ is the same yesterday and today and forever.

James 5:14-15
Is any one of you sick? He should call the elders of the church to pray over him and anoint him with oil in the name of the Lord. And the prayer offered in faith will make the sick person well; the Lord will raise him up. If he has sinned, he will be forgiven.

I Peter 2:24
He himself bore our sins in his body on the tree, so that we might die to sins and live for righteousness; by his wounds you have been healed.

I John 3:21-22
Dear friends, if our hearts do not condemn us, we have confidence before God and receive from him anything we ask, because we obey his commands and do what pleases him.

III John 2
Dear friend, I pray that you may enjoy good health and that all may go well with you, even as your soul is getting along well.

Revelations 12:11
They overcame him by the blood of the Lamb and by the word of their testimony; they did not love their lives so much as to shrink from death.

Be Still

Today was Monday, right? The past few days have been such a blur that it's hard to keep tabs on pesky things like hours and minutes.

After spending last night at my in laws' house (with Abby, Isaac and Brady -- thanks mom and dad!), I headed back home this morning to get changed and drive our other car to CHO. When I arrived, Logan had just finished having a sponge bath, which he did not appreciate. At all. He was still fairly heavily sedated, but flailed and shook his head NO when asked questions and was generally disagreeable. The rest of the day was much the same, with him drifting in and out of very loose consciousness. He didn't open his eyes, but rubbed Lambie's ears a few times, which is something he does for comfort on a routine basis, and cried in frustration --those awful, silent, chest-heaving, intubated cries-- when he wasn't allowed to yank the tube from his throat.

The team is carefully monitoring his blood pressure and keeping his systolic number under 130 via medication on an as-needed basis. The MRI he had last night, as far as I'm aware, didn't show anything definitive, and the CSF culture hasn't yet grown any bacteria. That doesn't mean that he doesn't have meningitis, but the consensus is that he does indeed have some sort of infection.

Right now, Dr. S is operating to remove his shunt, since hardware can become a breeding ground for bacteria.

I could say a lot more, but those are the brass tacks and I'm tired. I'm trying to be still and rest in God's finished work. THANK YOU for being on Team Logan.

A Hard Day

It's been a Day. It's not capitalized because it holds any greatness, but because it's one that we won't soon forget.

Logan's suffering continued throughout the night. First, he moaned unintelligibly. Then he moved on to making random comments, including 'I have to pee' and 'my tummy hurts'. Then he settled into a routine of just crying out for Adam, moaning 'Daddy, daddy' over and over and over again. He was completely out of touch and largely non-responsive to us when we tried to get his attention. Aware that we weren't able to help him and with concern growing in our hearts, we dropped Abby, Isaac and Brady with Adam's parents and drove him on to CHO as quickly as we could.

Logan has been to the ED many times before, but this time it felt different. I'd called ahead and spoken with Annie, one of the residents, and she'd phoned down so they were expecting us. Ordinarily we go into an exam room, have vitals taken by a nurse, and then wait. Not this time. When we arrived, we were immediately ushered into a large room, where the ER doctor began barking orders at her co-workers. He was hooked up to monitors and quickly intubated while Adam and I waited in a nearby room. Logan hates being intubated and we couldn't bear to watch him undergo yet another horror. His blood pressure was absolutely out of control, at 150/120, and they worked to get it down as quickly as possible. They noted that his eyes weren't dilating properly -- not equal or particularly reactive -- and that he wasn't particularly focused on anything at all.

We felt a sense of hopelessness as we watched it all unfold; as Annie shared that he'd have a CT to check for disease, bleeding or a malfuction in his shunt. We cried -- a lot. We prayed that God would help him, would ease his suffering. We again surrendered him to God's protective arms.

After the CT, the ER doc came back and shared that the radiologist was 'confused' by the image. They didn't see rampant disease, nor did they see bleeding or a shunt problem. However, a significant portion of his brain was swollen and inflamed, which baffled all who looked at the image. (But it didn't baffle me; evil is evil is evil.)

Dr. S (the neurosurgeon) was called in to look at his scan, and he drew some CSF (cerebrospinal fluid) from his shunt for culture. He shared with us that it looked a little bloody, but he did just have surgery last week so it wasn't entirely unexpected. He also shared that his brain showed some 'changes', which could be the result of being on decadron for so long. He didn't elaborate, but said that neurology was involved, since another condition, called press --which is induced by high blood pressure and presents like Logan presented-- was a possible diagnosis. Dr. M --one of the oncology team members we like most-- was on call. She came in and shared her thoughts. I asked about meningitis or encephalitis, and she said that the scan didn't look consistent with either of them, but that since Logan is Logan and he presents with bizarre conditions, they'd go ahead and start him on aggressive antibiotics.

Eventually, with Logan heavily sedated and on painkillers, we were taken to a private room in the PICU. We weren't there long when the nurse got a call that his CSF sample stain had shown bacteria cells -- those that cause bacterial meningitis. Dr. M was quick to say that they don't officially diagnose it unless the culture *grows* the bacteria, but the symptomology fits.

Meningitis. I can honestly say that I'd felt little fear until I heard that word. It's a scary one. But I know we're doing everything we can do. Dr. M repeated several times that they're doing all they can do. That they're being proactive. That they're fighting for him. And I believe they are, because they know Logan and they love him. Maybe not like we do, but they do love him.

Neurology requested an MRI this evening, so he went down to radiology for that. I stayed behind and met with our pastor. And from that meeting, I emerged feeling encouraged in faith, and encouraged in belief. And I ask all of you who Believe to claim authority over sickness and cast it out of Logan's body in Jesus' name. Because friends, we DO have that authority. I know it's not popular and I know a lot of perfectly good people don't think that sort of power by the Holy Spirit is available to us in this age, but the Good news is that it IS. The Word is alive. We need to use it. We ARE NOT powerless if we Believe. Say it to yourself until you believe it: We are NOT powerless if we Believe. God gave us the power via the Holy Spirit to cast out demons and command authority over all the earth. It's up to US to use it.

Thank you for praying for Logan.

Crisis

I've not written in a few days, I know. It's mostly because I've been sticking to the old adage: If you don't have anything nice to say....

Logan was released from CHO on Friday. And, to be blunt, he's a complete mess. He's having trouble swallowing so his mouth is almost always filled with spit and his speech is mostly unintelligible. He's clearly uncomfortable. His face is badly scratched and scabbed from the surgical tape that held his ng and intubation tubes in place during surgery last week. His hearing has gone from bad to utterly awful. And that's on top of every other problem he previously had. My little sunshine, my dear, sweet, couldn't-hurt-a-fly, loves-everyone little boy, is suffering mightily.

Right now, at 2:57 a.m., he's screaming in his bed. He picked at the same scar that he's picked at repeatedly for the last few months which of course opened the floodgates. Adam is holding tissues on it to stop the flow, but it's the same old story of late.

We're devastated. We've prayed ceaselessly for God to ease his suffering yet things only seem to get worse. If he weren't suffering, we could deal with the other complications. But seeing him in pain... it's like combating flaming arrows with no protection. The red-hot tips sink into our flesh and tear at it with a brutality like no other weapon. (And yes, the reference to Ephesians is deliberate, bear with me.)

Still, we call upon the Lord. We read healing scripture over him multiple times each day and command evil to leave him alone in the name of Christ. This battle that we fight is beyond intense. And it's extraordinarily personal. If you Believe with a capital B, please join our prayers. Prayers that the disease and evil plaguing him would be banished by the authority of Christ. Claims of authority over the malfunctioning parts of his body --which are almost too many to number-- commanding them to function as they were designed by God to function. The prayer WARRIORS among you will know what I mean here.

We must take the authority given to us by the power of the Holy Spirit. We must take it and use it. Because it's not all about God fulfilling his perfect plan. No, I don't think God's will always comes to pass on this earth. (And truthfully, if anyone among you thinks that what's happened to our family is God's doing, I feel for you because God is a God of love and compassion who desires to give us a future and hope. I believe He's more than dismayed over the sustained separation, fear and grief we've experienced over the past 17 months. No, I would argue that it's an insult to God to assert that the mess we've lived and continue to live are according to His will for us. So don't even go there.) Right now, it's about using the tools with which God equipped us to fight off evil when it strikes. And it's most definitely striking NOW.

Calling the Turnip Truckers...

I just had a thought.

Rather than feeling sad or sorry for my family and for Logan right now, feel joyful. We're going to get the chance to see miracles firsthand. How often does that happen? Probably pretty often, if our eyes are open and looking for them in everyday life, but the big stuff? Not often.

In the name of Jesus Christ, Logan is healed. The Word is rooting itself in my heart.

Too Much?

A lot of you are connected to me on Facebook so you saw my status update from earlier today. After roughly 4 hours under the knife, Dr. S finished his work on Logan and came out to talk to Adam and I. He took a seat, a breath, and declared simply "it looks like tumor" according to the quick-freeze pathology. He said that he got a large chunk of it --perhaps more than he thought he'd get from the imaging-- but as we knew previously, the mass was too tightly entwined in his spinal cord's nerve fibers to get it all. So a piece remains. In addition, the neurological stimulation they did on his legs yielded no response. So he's paralyzed for now.

We were stonefaced when we got the news. Stonefaced. I felt a twinge of sheer agony, of course, but I was holding Brady, we were sitting in the cafeteria surrounded by people enjoying their mid-afternoon meals, and well, there's always something surreal about those moments. It's like the world is about to come crashing down on you and there's absolutely nothing you can do to avoid the fallout. Once the initial stonefacedness wears off and physical reality sets in, that is.

Logan was moved to a private room in the PICU --it has to be private since he's still immunologically challenged from the BMT cycle last year-- and I went in to see him. (Adam and I found a relatively quiet place to talk and pray beforehand, of course. But the details of that conversation are going to stay private.) He was still sleeping from the anesthesia, and he was getting a blood transfusion. Apparently his hematocrit dropped after the anesthesiologist hydrated him. His heartrate was lower than I'd seen it in ages, in the 40s and 50s --which I admit was very scary, given than he's been tachycardic for over a year now. His body temperature was only 95 degrees, so his nurse was trying to get him warmed up with layers of warm blankets. His blood pressure was still on the high side, but his respirations were good. So all in all, stable. Not good-stable, but stable enough for him to be left in the care of just the PICU nurse (as opposed to the PICU and recovery room nurses).

I'm not sure when the actual pathology report is due in, but Adam said that Philippa said Dr. T would come see us tomorrow. The assumption is almost certainly that it's AT/RT, slowed by Avastin, Accutane and Vorinostat, but I don't know. I do know that in order for him to qualify for any experimental treatments --which are all that's left at this point-- his general health has to improve quite a lot. Dr. T did tell Adam that there are drugs we can try that might slow growth or cause tumor shrinkage for a while, but so far, there's nothing curative available.

I feel broken inside. More than broken. Angry, bitter, frustrated, betrayed, victimized. I firmly believe that illness --especially illness in children-- is 100% of Satan, but I don't understand why I can't get him off of Logan's back --literally. There's no glory in the suffering of a child, period. I know that some of you will argue with me on that, but you're wrong. God is good and loves children. And He can't lie, so when He says that sickness comes from evil, that's where it comes from. Period. Evil runs rampant in this world, hell-bent on taking out the best of us. I mean, come on. The one thing that so many of you always remarked on was Logan's beautiful smile: Even with no hair, no eyelashes, skin and bones body, he still had that winning grin. But now, of course, the smile is marred by paralysis. Purely evil. I call the devil out on that one. It's a cruel attack, nothing more, nothing less. A cruel, soulless attack designed to hurt us and to make Logan suffer more. That's not of God. That's nothing that God would will. And if you think it is, I beg you to re-read your Bibles and re-examine your perspective.

Anyway. That's where we are. I've cried a lot this evening. A lot-lot. But I'm reasonably calm now, and I'm not giving up. I'm not giving up on figuring out how I can claim authority over evil and cast it out of Logan once and for all. I'm not giving up on Logan's future here. I'm not giving up on seeing my family completely whole and healed. I'm crushed, but not destroyed. So please: Don't give up on Logan. It's what Satan wants. Don't give in to him. Pray harder, pass it on, profess authority over evil. Because after all: He who is in us is GREATER than he who is in the world.

Here.... Again.

We --meaning Adam, Logan, Brady and me, since Abby and Isaac spent the night at grandma's house-- arose at 5:30 this morning to head to CHO for surgery. Logan was cranky today, no doubt, complaining that his tummy hurt and repeatedly coughing up the same small amount of 'stuff' that he's been coughing up for weeks now. Months, really. Anyway, we got here, got checked in, and went to pre-op, where Logan's favorite radiation nurse, Jeri, popped by to say hi. We spoke with the anesthesiologist, Dr. H, who he's had several times before, and asked about his numbers from yesterday. Triglycerides were, thankfully, down to 212, a marked improvement over Friday's 1,100. But it's hard to know if that's a true improvement or if it's because he hasn't been eating much. His weight was also down to 17.4 kilos, which is a fairly significant drop, but again, he hasn't been eating much; just a bite of this or that.

It's frustrating to be here again. Heartbreaking. He's suffering so horribly right now that it shreds my heart into pieces. I try not to think about it, but I'm not an automaton. It crushes me to see him so uncomfortable. Not eating. Sad. Tired. Not himself.

There are still rare moments when he's still his genuine, sunny self, but they're rare. My heart leaps for joy when he smiles or says something predictable. But then he goes back to being surly and whiny, and the moment's gone.

I'm worn out. And I'm angry that the devil, that wretched fallen spirit, has targeted such a beautiful soul in such a heinous way. But although my heart weeps over the way things are, I trust that they'll be better soon, because God says He's good, and God cannot lie. It is the ENEMY who brings disease and sickness. So even as I feel sorrow over how things have transpired, I know that God is still the God of healing, and that as a Christian, I have the authority to send satan packing back to hell.

I guess that's a little intense for the morning, but it's the Truth. And I'm stickin' to it.

The Plan

I've been remiss with updates; I apologize. I've been doing a lot of thinking and praying and studying. I know that you all like to know what's going on and I certainly want you to be informed, but at the same time, I needed to take some time for intensive study.

Logan was finally released from CHO on Friday. His triglycerides are still about 1,000, which is still 10 to 12 times too high, but the medical team was comfortable enough with the number to let him go, as it remained stable over a few days following a second round of pheresis.

He returns Tuesday at 7 AM to undergo a spinal biopsy with Dr. S. Once the pathology from that comes back, we'll move forward once again.

He is, by and large, pretty miserable but hanging in there. He's paralyzed below the belly button, which is in the line with the lesion in his spine. As a result of that, he's incontinent, and his bladder doesn't empty itself effectively, so we had to learn to catheter him every three hours to prevent urine from backing up into his kidneys. He's also refusing to open his right eye; he keeps saying it feels like there's something in it. He *can* open it, but usually won't. The left side of his face is still paralyzed. He has a nosebleed from the right nostril probably 2 to 5 times a day, the result of low platelets which are probably the result of Avastin. (I've gotten to a point of pretty much despising Avastin, for what it's worth.) He doesn't sleep well at.all, and given the paralysis, wants to be re-positioned constantly because he can't sleep and is restless. I want to get him off the steroids ASAP since I feel like they've had a massive negative impact on him, but everything takes time.

Clearly, there's not a lot to be thankful for. No real points of light or places to look at him and think 'well, *that's* an improvement'. He looks terrible. He feels terrible. That's part of why I didn't want to post, to be honest. It's as if I could just feel the wave of 'oh my gosh, that poor kid is doomed' thoughts settling over us. But you know something? I don't care how things *look*. We proclaim him healed in the name of Jesus Christ, and believe that we'll see it happen. Don't get me wrong. It's very, very hard to look at the physical 'reality' we're faced with and believe it. But believing in your heart is so important -- just look at Matthew and Mark, when Jesus said we can move mountains if we believe and don't doubt. So I've been studying the Word and believing in the Truth. I hold to what I wrote last week about unbelief's toxic nature 100%.

Please don't give up on Logan. As his prayer partners, believe in your hearts that healing is here for him. The devil wants us to give up. He wants me to give up. But I can't. I will not give up on my son and I will not give up on his future here.

Please hold him and the surgeon and surgical team in prayer on Tuesday at 7 AM as he enters surgery once again. May God's hands guide those of the surgeon --as He did last year when Logan nearly bled to death in the OR-- and give the entire team wisdom beyond the human norm. Thank you for your prayers and for your belief.

Monday's Apheresis

Hello, Tuesday.

As planned (though after several delays), Logan underwent apheresis last night to help bring his triglyceride level (and by extension, cholesterol and blood pressure) down to a normal (and safe) figure. When I arrived for my overnight shift, they'd just finished the process, and Nadine, the apheresis nurse, was admiring (or completely grossed out by) a huge bag filled with what looked like heavy cream. Fat. The massive amount of fat removed from Logan's blood. She said it was the largest volume she'd ever pheresed from anyone. Granted she wasn't a bit surprised given the outrageousness of his triglyceride level, but still: The final product was disgustingly impressive. (As an aside, I should apologize to my poor Facebook friends who got to see a photo of the bag. I know it's yucky, but I think it illustrates the urgency of Logan's situation and his need for prayer.)

Post-procedure, his triglyceride level fell to 1550, which is still more than ten times what it should be, but a marked improvement from 8,000, which is where the number rested yesterday morning. Depending on where the number is this morning --the doctors have yet to round so I don't have the data-- they may pherese him one more time today to try to bring it down further. There's still a lot of head-scratching over how the number got so egregiously out of control in the first place. In fact, Dr. W, the doctor on service this week, apparently told Logan yesterday morning that he continues to be an "enigma" around here; no one can understand why so many weird and seemingly random things keep happening to him.

I get it, though: Satan is transparent. He likes to cause trouble for Logan, and he does it in bizarre but 'well duh, I wonder why *that* happened' ways.

I thank you for continuing to pray for Logan's healing. I felt buoyed by faith and hope this morning for the first time in a long while and I'm so thankful for all of your prayers. I continue to believe that healing is God's intent here, so sing it, sisters and brothers. Sing it.

I'm a Blade.

I've had some interesting responses to the post I made yesterday morning --Unbelief and Susan's Miracle. I'll be first in line to say that I'm no theologian. I took a class on religion in college and technically identify myself as a Christian in that I believe that Jesus was sent to earth by God and that He died to save us from our human inclinations. But I've had what I'll vaguely call 'issues' with God since my childhood.

It's a fact of human life that some people live easier lives than others. I am not one of those people. Those who know me well would probably agree that I've suffered more pains and dodged through more obstacles than most people my age. (And according to some people, more than some others have weathered throughout the courses of very, very long lives.) So, my experiences color my view of God. And honestly, they fully explain why I have a hard time --a colossally hard time-- believing that God is 100% good.

Call me unteachable or unreachable if you will, but I don't appreciate it when people who haven't walked in my shoes criticize me. It's extraordinarily easy to sit in an ivory tower and say things like 'oh, yes, God is good. Oh, yes, if He asked for my child I'd give him up straight away.' But I'm here to call that out as complete hogwash. It's hard to be me. It's hard to feel the terror I feel every morning. It's hard to trust God with Logan. And I'm here to tell you that unless you're some sort of saint, you too would struggle just as much as I do with our current reality. You'd long for people to say and do helpful, positive things. You'd shy away from criticisms and less than helpful --although no doubt well-intended-- remarks.

Anyway, I suppose there's no real point to this post, other than to say that unless you have something to share that will build me up, please don't say anything at all. I've asked --repeatedly-- that folks refrain from preaching at me. I've said --repeatedly-- that I want only healing prayers, and that if you feel the need to pray in other directions, feel free, but please don't chip away at my hope by sharing your plans with me.

I'm sorry. I'm a little raw. A little chafed. And a lot exhausted. And frankly (and with all due respect), most of you haven't a clue.

Monday Morning

I only have a minute to type because 'normal life' --or at least our current incarnation of the concept-- begins anew today. Logan had a rigid line placed in his leg last night so he could undergo pheresis this morning. It's the same process that was used to harvest his stem cells over a year ago. This time, rather than removing stem cells, it'll remove the excess fat from his blood that's causing his triglycerides, cholesterol and blood pressure to soar to dangerous highs. It should work well, and it's a good thing: The anesthesiologist from last night's line placement(s -- he also got a pic line in his left arm for blood draws) told Adam that his blood was "creamy". Not a word you want associated with your blood.

Anyway, thank you for your continued prayers and belief. I confess that I've been struggling mightily to hold on to that very belief, and am wrestling with what often feels like overwhelming unbelief. But Matthew and Mark both say that mountains can be cast aside if we can overcome unbelief. So onward I go. Please pray for me to be able to believe.

Unbelief and Susan's Miracle

There's a single line from a beloved classic Christmas movie that's looped through my mind almost constantly over the past month:

I believe, I believe. I know it's silly, but I believe....

Anyone who's seen the original Miracle on 34th Street will recognize little Susan in their minds' eyes, repeating those very words near the film's conclusion, slumped against her car seat, wallowing in disappointment.

The irony is that despite what her mouth says, her heart doesn't believe it until the very moment that she sees her big desire come to fruition in the physical world. She was one lucky girl to have her wishy washy belief confirmed in such can't-miss-it fashion.

In a way, I'm envious of Susan's miracle. I used to think all the time that if I could just take Logan back to Jesus' day, I'd do everything within my power to be sure that my sunshine could lay a finger on the hem of His cloak. I longed for that. Yearned for it. But of course, it won't happen because that was 2,000 years ago. And there's not a big point in wasting a lot of precious time gnashing my teeth over what I wish I could do but can't. After all, God knows me. He knows that I wish I could go back in time. So that leaves me with the present.

The thing that gets me most about Susan's miracle is that it was granted despite rampant unbelief. How awesome is that? Even though in her heart she didn't really believe the words she was saying, the one thing she wanted more than anything was given to her. I think that's how God works, too.

I know, I just fell off that turnip truck again. Check for bruises next time you see me out and about. The crux of what I mean here is that we can never do anything to earn miracles or blessings or good things. It doesn't matter how much we pray or beg or whine or yearn or paint ourselves with ashes and don sackcloth. God does good things for us even though we don't deserve them.

The caveat? In a way, and I'm still seeking on this so bear with me, I think we do have to cast off unbelief in order to fully receive. Think of it this way. Let's say you're super hungry and you go out to eat. You order a big, juicy steak and it's placed in front of you, cooked to perfection and surrounded by a sumptuous heap of creamy mashed potatoes. You start to dig in and then remember you left your teeth at home. D'oh. There's this huge, beautiful plate of food in front of you, but you can't indulge in anything but the potatoes --which are good, but not the main course-- because you aren't fully equipped to receive. Allowing yourself to be dominated by unbelief is like leaving your teeth at home: You get a little bit of the big blessing, but deny yourself the meat of the meal.

We've seen truly remarkable things happen with Logan over the past 17 months. If you're new to this blog, I think I speak honestly --and long-timers can correct me if you so desire-- when I say that some uncanny and supernaturally bizarre things have occurred as we've traveled a path to healing.

Still, despite those experiences, I've been dogged by unbelief in its most aggressive and primal form. Fear, worry, hopelessness, doubt wake me up at night and threaten my hope and faith. It's not that unbelief has prevented Logan from receiving, because he clearly has --he's still here, after all, and against some pretty strong odds-- but I would wager that unbelief --from all sorts of sources-- may have prevented him from receiving the FULL and COMPLETE blessing of healing from God.

I believe that God wants Logan to be healed on this earth. I believe that He has a plan and a purpose for that little boy beyond just five years. I don't believe that evil wages war on people who aren't, for one reason or another, important to the Kingdom of God. I also believe that Christians --and people of faith in general-- tend to shy away from praying with expectation. Moreso, I believe that we're a culture steeped in unbelief. Why else would we fail to pray with expectation that we will receive that for which we ask? Because it's easier to just utter 'Thy will be done' than it is to really engage with God.

I should say that I don't think that we can cause God to do anything. Our prayers won't knock Him off his throne. But I think unbelief can serve as a blocker that can keep us from receiving the full glory of God's intended blessings. So my challenge, right now, is to do away with unbelief. To cast away evil and to ignore its obvious attempts to steal my hope. I've struggled mightily with unbelief throughout my nearly 34 years. (Three more days til my birthday. Accepting Starbucks. Kidding. Sort of. :) )

So now, I ask that you stand with me, not just begging God for healing, but believing that it will happen. Cast away your own unbelief. Now I should warn you: If you do this, it's likely that you'll find yourself becoming more of a doubter. But that's okay -- it's just the devil trying to lead you astray. Cast it aside and move on.

Phew. That was a moutful, huh? Have a blessed day, and thank you for believing in healing --for knowing that healing IS-- for my little sunshine.

Expectation

It's ironic, really. One of the hardest things about this journey we've been on with -my optimistic, sunshiny Logan is my own lack of expectation. My pessimism. A deep-seated, overarching, dominant feeling of dread and defeat that, to be honest, has dogged me throughout my life.

It's not that I think I can make truly outrageous things happen with a cheery smile and a good attitude. It's that I strongly suspect that we get no more than we expect. If I put God in a box, why would He do amazing things? If I don't anticipate them, expect them and sing praises when they happen, what good am I to the Kingdom of God?

Before you start to think I'm being sacreligious, think of it this way. Matthew and Mark and a bunch of other places in the Bible talk about praying with expectation that you will receive. Expectation. (Trust me, the concept is all over the place.)

So as a Christian, why don't I pray with expectation? Why do I beg and plead and cry out to the sky for help when the Bible also says that God is ALWAYS with us? It's a hurdle I've been trying to jump over for months now. Years, really.

But right now, I'm pressing myself hard to leap over it and pray with EXPECTATION. Belief. God made Logan into the utterly awesome (really, you should meet him) person he is. He didn't give this child disease or affliction. Satan did that because Logan is special. And now, as his mom and as someone who recognizes precisely what the devil is trying to do, I'm going to try my hardest to pray with expectation. To not feel sorry for myself or lament strikes by evil. To avoid allowing myself to be overcome by waves of hopelessness. Because that is precisely what Satan wants for me. He wants me to give up and let my guard down; he WANTS me to stop praying with expectation that we will receive. Why? Because Satan knows that prayer works. He knows that praying with expectation leads to results.

Anyway, that's my long-winded reflection and my longer-winded way of asking all of you to please pray with expectation for healing. Don't be sad over Dr. T's comments today, because that sadness can weaken your resolve. No, soldier on, praying with GREAT expectation and hope and belief. I have to be mindful that the devil manipulates my emotions, and I have to cast him away whenever I feel my resolve fade and my mood devolve.

Again, expectation is the key: Logan will be well. It's not about being delusional. No, it's about recognizing and claiming a truth that's been real since the beginning of time.

Now get to work! And thank you.

Something of a Turn in the Wrong Direction

My first night in the hospital in a long while was a very long one indeed. Logan's little roommate, who never seems to have a parent with her, was up every 20 minutes yelling and fussing, which of course awoke Logan too. And forget about me.

And the day hasn't been all that great, either. After a quick trip back home for a mom-daughter dance class, I returned to CHO just in time for Dr. T's rounds. He said that Logan's triglyceride number hadn't fallen much --only 1,000; they'd hoped for 6,000. As a result, he'll likely have a line placed in his leg in a day or two, and then undergo apheresis --blood spinning-- to remove the excess fat. He reiterated that he was puzzled by the mega high number and said he'd never seen anything like it happen. Anyway, it's likely that he'll be here in the hospital for at least another week. So for the second year running, Logan will be at CHO for my birthday. It sucks. And it makes me sad.

But ironically that's almost the *good* news. Despite Adam's report from yesterday, my interpretation of the doctor's assessment of Logan's MRI isn't so good. In short, he said that there are three areas of concern: The area in his thoracic region that I mentioned yesterday; his left 8th nerve (which is responsible for the facial palsy and hearing loss -- the area of contrast is apparently longer and fatter than it was); and a small spot in his lower spine that's a little larger than it was previously. The worst part, however, was when he said it was "likely" that there was tumor activity going on in one or all of those areas. I noted that the growth was pretty slow for AT/RT, and he agreed, but didn't say much else.

Hearing all of that absolutely sucked the life out of me. I suddenly felt hot and very, very sick. This walk is damn hard. I've found myself saying "Lord, please take this cup from us" over and over again, yet it's still here, pressed against our lips.

Please pray and believe in healing. Please. I just don't know what else to do.

MRI and the Hospital Stay

After an agonizing afternoon, Adam finally called me with the MRI 411. And it's something of a confusing mixed bag. Because you know, that's the way life has been for us for the past 17 months; the whole 'repeated opportunities to have more and more faith' effect.

The Good is that the edema in his spine has actually decreased some, which suggests that the Avastin may be working after all. Additional Good is that the spot in his lumbar region that had the radiologist in a tizzy back in November looks unchanged. The Not as Good is that a nodular spot --which apparently has been there all along; I hadn't realized there was anything nodular anywhere but Adam insisted there has been-- in the center of the bad radiation damage is about a millimeter bigger than it was 6 1/2 weeks ago.

Dr. T isn't sure what it is. No one's sure what it is. Such relatively slow growth isn't typical of AT/RT cells, so no one's jumping to that conclusion. However, it's concerning that a) it's there and b) it grew. So Dr. S the neurosurgeon took a look at the images and said he thought he could go in and get half to 2/3 of it, so that's what he'll do as soon as we can get his triglycerides stabilized and his platelet count improved.

I'm not pleased to be going back to Biopsy City, but I'm breathing a sigh of relief that his spine isn't rife with disease. Part of me had been utterly terrified that the MRI would show rampant disease everywhere, especially given how bad his clinical presentation has gotten in recent weeks. But that's not the case. So I'm thanking God for that, even in the midst of a situation that continues to be frustrating and frighteningly uncertain.

Anyway, the triglyceride level (coupled with too-high blood pressure) earned Logan a spot in the hospital through at least the weekend. I'm here with him tonight for the first time since he was first diagnosed in 2010, now that Brady will drink from a cup. He has a roommate, so there's ample noise from the other side of the room, but I'm hoping sleep will happen anyway. Dr. T is flummoxed by the triglyceride reading; apparently his former high water mark was 9,000, so Logan has that kid's figure beaten by quite a leap and a bound. He has no idea why the number skyrocketed, but they're doing what we can to help him, and are in touch with a doctor at UCSF who's done research on the subject.

I could choose to be really angry right now --especially since it looks like my birthday (1/11) will be ruined for the second year running-- but I feel a healthy modicum of peace over it all.

As I was re-installing the kids' carseats this evening before heading out to CHO, I felt a rush of anger. Toward the devil. I probably looked a little crazy as I ranted, telling him and his cronies to get the heck away from Logan and our family once and for all. But I don't care. It felt good to strike out, and to do it at the root cause of our circumstances. I could blame God for all of this, but it's the devil's work.

Prayer warriors and friends, I ask you to please tell satan to get behind us once and for all. That's the best, most helpful thing you can do for our family right now. Amazing things are afoot. Believe it. Know it.

Waiting

We're still waiting for MRI news. But right now, I'm beyond furious.

Adam let me know that Logan's being put on a no-fat diet for the time being, which means he can't have the thing he's been thinking about for hours: Chocolate cake. He loves the chocolate cake at CHO. He talks about it at home. But because a herd of morons didn't check a level for a long while, my little sunshine can't have it and his already crappy life just got crappier.

So far, the team thinks that the outrageous trigylceride level is the result of the Decadron, though Adam says they're all very confused about it. And as far as I can tell, it holds true that they hadn't checked his triglycerides since November, when the number came back high-normal.

Why on the Lord's green earth would you NOT re-check a number for something that can be negatively impacted by steroid use when the initial figure is elevated? Why?

One word is running through my haggard mind right now: Malpractice. I've tried to be forgiving despite some misses by the medical team in the past, but now I'm just angry. They're paid to take care of Logan, and from where I sit, they're doing a half-bum job. And this mama bear is ANGRY.

Admitted.

That's right: Logan is being admitted to CHO as I type. And I'm PISSED.

As it turns out, his hemoglobin level wasn't the only unusual one. His triglycerides, which should be a double-digit number, were 13,000. Thirteen THOUSAND. That figure pushed a panic button in someone, and now they're in the process of trying to figure out what in blazes is going on.

I'm speechless. No, not really. I'm just so angry and frustrated and feeling so utterly abandoned and annoyed that I have nothing productive --and nothing that wouldn't be censored heavily-- to type.

Evening Time

I'm guessing by the uptick in blog traffic today that some of you are checking in a little more often than usual. I should tell you now that the MRI was originally scheduled for 2 PM Pacific, but that an emergency (one that wasn't ours) earlier in the day pushed it back to nearly 4 PM. He only came out recently, and right now they're paging the oncology team because his CBC numbers don't look great. His platelets are at 56, which is low but okay, but his hemoglobin, for some reason we don't understand, is below 8. It's not a good number and there's no good explanation for what's going on that made it take such a dramatic tumble. (It should, for all intents and purposes, be 9 or higher.)

You all know that I'm blunt, and I'll be blunter than blunt right now: I'm worried. Scared. Not confident. I'm scared that evil is winning this battle, plain and simple. Logan looks awful. He's exhausted. He can't or won't put weight on his legs. His CBC numbers are poor. He's incontinent. If ever there were a situation that looked utterly hopeless, this is the one.

In response to those observations, I am, for the upteenth time, begging you to lift him up in prayer in a new and awesome way. I vascillate between believing that healing is ours if we claim it, thanks to Jesus' sacrifice, and worrying that God won't see fit to make Logan well. I don't know the reality there. But the one thing I DO know is that the Bible says to pray, and to do it often. So please do so, for my sunshine.

Raw

It's been a long day. After a week and a half's stay on the East Coast with family, we headed back home this morning. Naturally --since it's our mode of late-- it wasn't an easy journey. Our flight --carefully chosen because it involved just a single stop and NO deplaning-- was cancelled, and we were re-routed through a different city on a flight that involved an additional stop as well as a plane change. We weathered the drama well enough, only to get to our home airport and discover that our bags had been lost in transit. There were some serious issues with a borrowed carseat, but it's all in the past now and we're home. At last.

Logan's MRI is scheduled for tomorrow afternoon. I feel pretty raw, really. He's not in great shape lately, so of course there are nerves as we approach the hour. But at the same time, I know the only thing we can do is pray, so it's what I've been doing. And what I'll continue to do. And what I ask you to do as well.

I know it's sort of a radical concept within mainstream Christianity, but if you really believe in healing, please claim it for Logan. Some of you will know exactly what I mean; others will scratch your heads. That's okay. Heading into tomorrow and the weeks to come, I'm just asking for some seriously hardcore healing claims to be made on his behalf.

I'm tuckered out, so it's off to bed for me shortly. Blessings to you and THANK YOU for being a part of Logan's Team. It really, truly does matter.