Friday

I'm sorry I didn't update yesterday. The short version, for folks not connected to me on Facebook, is that Adam took Logan to the local hospital (we're away from home) yesterday to be evaluated. He'd been cranky and congested and complaining of tummy pain and extraordinarily whiny, so we decided it would be best to have him seen.

He had chest and abdominal x-rays, a CBC and they drew blood cultures. The chest x-ray was normal, and the abdominal one showed a lot of stool in his bowels. His CBC was okay save the platelet count, which was very low but not low enough to warrant a transfusion --in the 30s. It's not really a big surprise, since he's had frequent nosebleeds lately. They gave him a single dose of a broad-spectrum antibiotic and then sent him on his way.

He's pretty much completely incontinent right now, and unable to bear weight on his legs. And my heart? Completely broken. It desires healing, but it doesn't appear to be coming. And our current reality is just horrible. It's hard to care for the others when my heart is so, so broken. He's my little lamb and I can't fix him. And God, for one reason or another, isn't fixing him, either. I'm watching him fall apart, bit by bit, function by function. It's probably what it's like watching an older person deteriorate, but so much more painful, since we expect our elders to fall apart with time. It's not what we expect for our babies.

I've been doing a lot of thinking and reading about healing, and trying to embrace the healing that I suspect may already be there for Logan. But it's hard. It's hard to see it happening when he's such a shadow of the spritely, bright spirit he once was.

I feel a sense of hostility when I ask for prayers and others feel the need to respond assuring me that God has a plan and that it's not ours to know. I feel anger when I sense a refusal to pray for healing. And I do feel that way from time to time. There are people who probably have good intentions who can't seem to respect my wishes, and those people only add to the heartbreak. The heartache.

Anyway, this is disjointed, but it's where we are. I feel at times that if I could just embrace healing and love, that Logan would be made well. But given my history, it feels like a near-impossible task. Ah well. It is what it is.

On Intercessory Prayer

I've made no bones about it. I consider Logan's battle with cancer to be spiritual in nature. In my reading of the Word, I've become increasingly convinced --yes, convinced-- that we cannot ignore the evil that seeks to mar and destroy human life. When we refuse to admit that it exists, we're more susceptible to its nefarious deceptions.

I've also made no bones about expressing my desire for Logan's healing. As a direct result of that heartfelt, heart-driven desire, I've called on you to act as intercessors on his behalf. I've called on you to plead for healing, for mercy, for peace. I feel a profound sense of gratitude to all of you who have faithfully honored that request, taken up the armor of God Ephesians-style, and gone to war for my little sunshine.

With all of that said, I have to take a risk here and be honest about what doesn't help me. I get frustrated when I ask for intercessory prayer and meet with resistance. If you're not willing to pray for Logan's healing, please don't share your decision with me. It hurts me, it strips away my hope, it leaves me feeling alone and defeated. And I don't deserve that.

A huge part of this battle for me is a mental one. Do I have the faith to believe in healing? Do I have the faith to believe that God desires wellness? Do I have the faith to get up tomorrow morning and go about the business of life when we've been so badly battered by disease and uncertainty for the last year and a half? I want to have that faith. I want to have that belief. I thirst for it. But it's hard; harder than I can express via the written word. Does God NEED to know that lots of people want Logan to be well? Nah. But the knowledge, as a parent, gives me a sense of hope. I don't know why, exactly, but it does.

Anyway, I just wanted to get that out there. I cannot give up. I have to believe. I thank you for your intercessory prayers and for being true warriors for my son and our family.

Just Pray

A Merry Christmas to all of you. It's been a bittersweet day for us. Logan's outward condition has continued to deteriorate. Now he's unwilling to walk unassisted at all. Further, he won't walk without someone holding both of his hands and supporting much of his body weight as he leans forward. He is, put simply, very uncomfortable.

I'm so heartbroken that I can hardly bear the pain. All I wanted for Christmas --this one and all to come-- was improvement in his condition. And I didn't get it. I feel exhausted, betrayed, hopeless. We still don't know what's going on, but it's upsetting to think that the Avastin isn't working and that he's suffering so very much.

Look, I know you're all in holiday-mode. I know that some of you think of us maybe once every few days and then stop yourselves because it's too painful to do so. But please: I BEG you, in the most primal, desperate way I know how, to pray for Logan. To pray for that healing that feels so elusive right now. I'm scared to death. I'm struggling --absolutely struggling, flailing-- to hold onto hope. And I get it --there is more beyond this life. But our family is so precious to us. We need him.

Thank you for praying and for passing this on. Blessings.

More Avastin and a Leap of Faith

Yesterday, Logan received his third dose of Avastin. From all outward indications it's not really working, but we're pressing onward anyway, still hopeful that it IS indeed having a positive impact on his ravaged spinal cord and that we're just not seeing it yet. We'll find out on January 9, when he has his next MRI. That's just two days before my next birthday, #34.

Obviously, I have mixed feelings about the timing of the scan. As I see it, my birthday could wind up being a day of great joy, or one of almost unbearable sadness. I pray fervently for the former. I need a break. I need happy news. I need some relief.

The clinic visit, as I heard, was fine. Dr. T reiterated what he's been saying since September: He thinks, based on the most recent sets of images --the last from Thanksgiving week-- that it's spinal cord damage, and the neurosurgeon concurs. But it's very, very hard to tell. The trouble with walking can be attributed to any one of a number of root causes. The incontinence issues are baffling, as they seem to be on and off: Sometimes he realizes he needs to go and asks, others he seems unaware and has accidents. Since no one --but God, granted-- knows what's going on and we all want to give my poor little sunshine some relief, we're tapering the Decadron a tiny bit and praying --again, fervently-- that nothing new crops up, and that nothing gets worse. Given the complaints of pain in his knees when we try to get him to walk, Dr. T also gave him some hydrocodone. He also, with the psychiatrist's approval, went up a little on his sleep aid, since his body quickly figured out how to metabolize the original dose and as of the weekend, he was once again awaking 8 to 10 times overnight.

It would be spectacularly easy to give up right now. He looks bad, he feels bad, my heart is broken, and I'm exhausted. In what's probably a response to feeling like he doesn't get enough attention, Isaac has morphed into a monster who tantrums 4 to 6 times a day; screaming, crying, fist-beating, neck-vein-pulsating fits whenever we ask him to do something he doesn't want to do, whether it be going to dance class, speech therapy, everything. Abby too engages in loud, aggressive attention-seeking, often offering up irreverent, rude remarks to me and Adam. I know that some of you have offered to take them for us, but the sad reality is that it wouldn't do anything because Isaac and Abby want US. They want their family intact and normal again. And we can't give them that.

But even amid my own failings of faith, a few important points keep coming to me, mainly a) expect amazing things, and b) don't underestimate what God can do WHEN HE WANTS TO DO IT. It's really the latter that strikes me. As much as I hate seeing Logan suffer through his current complications, I'd do it all with a grateful heart if I knew that he'd be well again down the line. But I just don't know.

That's where the leap of faith comes in. We all take them now and then. But most of the time, if I dare to say it, those 'leaps' of faith are really more like jumps on a hopscotch board. Sometimes I think that were I a truly faithful person, this particular leap of faith wouldn't be anything more significant than that. But no, it's such a big leap that most of the time I can't muster the courage to do it. I'm not sure what it is that scares me so much; likely just The Unknown. I think it scares all of us, to some extent.

Anyway. It's been incredibly challenging to string my thoughts together here because I've alternately dealt with Abby and Isaac bickering and Logan chattering away and demanding attention; but of course, he's partially deaf so I have to shout my responses, most of them more than once. It's exhausting. And infuriating.

Please keep praying for Logan's complete and lasting healing. I know that God hears prayers. Despite the voice in my head that tells me to just give up because God doesn't care what I have to say, I'm asking that you all soldier on for my sunny boy. In terms of particulars, please pray that the Avastin will do its intended job and heal the spinal cord damage. Pray that he'll be protected from any attempted return of disease, and that his facial and auditory nerves will return to normal, allowing the facial palsy to disappear and the hearing in his left ear to return.

I am, as I have before, asking for a wave of prayers. A tidal wave. An earthquake, a tornado, a hurricane, a volcanic eruption. Bold intercessions asking for healing, for restoration, for peace, for comfort.

Thank you.

Saturday

It's incredible to think that Christmas is a mere week and change away. What happened to the holiday season?

I wish I had positive news to share, but I simply don't. Logan just isn't doing well. His walking is very poor, and in fact, he refuses to walk at all unless he's holding someone's hand. His bowel incontinence is also worse, though we aren't really sure if he's truly incontinent or if it hurts him so much to get up that he chooses to have accidents to avoid the pain. He complains that "the backs of his knees hurt" whenever we make him stand, and would be happiest if we carried him everywhere. Unfortunately, he's very heavy so it's hard --nearly impossible-- for me to manage him plus Brady plus Isaac --who runs off constantly-- while we're out and about. On top of that, the facial palsy is still active in full-force, which affects his speech and his hearing. It's all in all a very bad situation.

Why he's having the problems is a big unknown. It could be the radiation damage getting worse. It could in part be the result of having been on steroids for so long. It could be disease.

The only known entity is that it breaks my heart to see him suffering. We pray constantly for alleviation of his pain and symptoms, and it's frustrating --no, devastating-- to see his condition continue to disintegrate. Where is God? Why is He letting evil win? Why isn't He helping Logan? Is He, and we just can't see it? What's the truth? It's very unsettling to not know.

Despite the questions and the unsettling feeling of not knowing, we must choose to have faith. We must choose to believe that faith can move mountains. We must choose to believe that healing is there and that it's in the works. Logan wants to be here, even amid his suffering. He wants to be with his family. I know because I've asked him.

What's difficult for me is actually believing. I absolutely struggle with faith. At the same time, I feel like I need to have it, not because I feel like I can do a thing to change our situation, but because faith is an essential part of being.

You've all battled for Logan before, so I'm asking you to do it again. God asks us to pray ceaselessly for what our hearts desire, so I'm asking you, begging you really, to pray for Logan's healing. I never ask you to do this, but let yourself go to that untouchable place of being in my shoes, in Abby's shoes, in Adam's shoes. It's horribly painful, but to feel the urgency of our prayers, you have to do it and feel it and imagine, for just a minute, that he's your beloved little one. Your blessed little soul. I just know that God can move mountains, and I know that He does hear waves of prayers. I also know, that as Logan's suffered of late, I've not reached out for prayers as I had before. But I'm doing it now. I'm once again asking for prayers for healing, comfort, peace, wisdom, understanding, faith, hope, belief, and everything else we lack that God knows about. And it's important that I draw a distinction for those among you who jump to the 'Thy will be done' camp: we're looking for healing here, for restoration of our family. We KNOW that there is life beyond this one. Again, imagine the desire of your own heart were he your child.

Blessings to you.

A Birthday

Today Brady turned one year old. In some ways it's almost impossible to believe that it's already been a year since his birth. In others, it feels like he should've turned 5 or 10. My heart feels old and haggard, so it's strange to think that I'm mom to someone who's a single tender year of age.

On the Logan front, things aren't particularly rosy. Despite incessant prayers that things would improve, they've only gotten worse. He's having increasing difficulty with walking and with bowel incontinence. As usual, we don't know why these things are happening. And the fact that they are happening has taken me to a new place in terms of figuring out what I believe with respect to faith, healing and Christianity.

It's become apparent to me that modern Christianity features two very different factions when it comes to healing: Those who believe that we can exact healing via belief and action of the Holy Spirit (a.k.a. those who truly believe --with their whole hearts-- that we can cast mountains into the sea), and those who don't. My heart wants to believe that the former is true. The notion gives me comfort. And honestly, the thought draws me closer to God. When I've been able to embrace the concept, I've spent more time in the Word and felt more confident in my faith. When I haven't believed it to be true, I've felt a sense of hopeless reticence. A sense of why would I bother to pray if my prayers don't matter?

It's very hard for me to look at my sunshine now and believe that he could ever be okay again. He's suffering. Yet we cry out every day, multiple times a day, for God to have mercy on him. It's maddening to watch what's happened to him. It's maddening to not know what's going on that's causing the problems with walking and incontinence.

I'm asking you all to have faith in healing for Logan. I'm asking you to pray for God to have mercy on my sunshine and make him miraculously well. I'm not asking you to pray a simple, non-committal 'thy will be done' prayer. It sounds weird, I'm sure, but God WANTS us to ask for what our hearts desire. My heart desires healing and nothing less. So please: Ask for it. Ask for improvements in his mobility. For healing of his damaged spinal column. For restoration and renewal. For life here on this earth. Because regardless of my weariness and sadness and hopelessness, I know that God hears those prayers and that they matter. So please, I beg you to send them up. I also remind you very seriously that there is a spiritual component to Logan's health battle, and ask you to take up your armor in his defense. He's SO worthy. I can't tell you how worthy he is.

Thank you for being a part of Logan's team.

Just Here

That about says it for me: I'm just here.

I've been quiet lately because I've not been in the best of mental states. I'm worn out by all of the drama. I'm tired of watching Logan suffer. I'm wondering if we'll ever see God's hand move. And honestly, I feel a little betrayed. I guess I'm just not a textbook 'good' Christian. When things get hard, I turn inward and worry. I can't just let it go like I should. I can't make myself trust. It's an unfortunate by-product of a life filled with lots of unpleasant experiences, lots of times when I've felt completely betrayed by God.

I know it's tempting for some of you to cut in here and disagree with me, set me straight, what have you, but it doesn't really help. Nope.

At any rate, I guess it's probably obvious by my tone that we haven't seen any improvements. As a matter of fact, he's gotten worse. He now refuses to walk without holding someone's hand, and is very unsteady on his feet. I don't know if it's an organic thing, or if he's just scared because he fell a few times this past week. But whatever the reason, it's exhausting --both physically and emotionally-- having a 5-year old who can't get around without a lot of help. Going up the stairs is a near-insurmountable chore, and he complains that his legs hurt whenever he has to move.

I'm at a point where I'm a new kind of brokenhearted. I'm brokenhearted that at the birthday party we attended today, he wasn't able to run around with the other little boys. I'm brokenhearted that two of the kids laughed and pointed at him. I know they're just kids, but that kind of thing is a knife to my heart. I'm brokenhearted that we've been begging and pleading for healing to come in a tangible, visible way, and not only do things not look better, but they look even less palatable than before.

I get up some mornings and want to lie in bed all day. I want to give up. I want to get in the car and just drive until I'm gone. My life, for lack of a better word and at the risk of sounding like a whiner, is hard. I want to give it to someone else. I want to loan it to the next person who laughs at Logan or tsk tsks at Isaac when he throws a loud tantrum in public. It would be lovely to just not be me, maybe just for a little while.

I really have no great words of faith right now. I wish I did. I wish I knew the truth. I wish life wasn't so hard. I wish God would just make it better. I wish I felt like He really and truly cares. But I don't think I do. Not right now. Of course, I'm like a foxtail in a field: I blow this way and that. So I know I'll change my mind again.

Anyway, thank you for being here for Logan. And for being strong when I can't muster up an ounce of energy of my own.