About Us

Our family of 6 (dad Adam, mom Sherry, big sister Abby and little brothers Isaac and Brady -- who was born on December 14, 2010) joined the ranks of pediatric cancer fighters when our 4-year old son Logan was diagnosed with a dangerous and highly malignant form of brain cancer in mid-August 2010. Logan's cancer journey began abruptly on Sunday, August 15, when his right eye suddenly turned inward during dinner. Twenty-four hours later, we were checking into Children's Hospital Oakland and finding out that life sometimes takes you places you'd never, ever imagine yourself going.

Friday, December 30, 2011


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.

Monday, December 26, 2011

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.

Sunday, December 25, 2011

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.

Wednesday, December 21, 2011

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, December 17, 2011


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.

Wednesday, December 14, 2011

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.

Saturday, December 10, 2011

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.

Tuesday, December 6, 2011

The Grand List

Ah, the advantages of sick children. Both Abby and Isaac went to sleep quickly. I fully expect at least Isaac to wake up more than once overnight, but I'm grateful for what I get, when I get it. Here's a listing of all of the issues Logan has as a result of his cancer treatment.

  • Spinal cord necrosis (damage from radiation)

  • Difficulty walking and weakness, particularly in the left leg (from spinal cord damage)
  • Facial palsy, left side, affecting speech, ability to smile, blink, and move most of the muscles (cause unknown, likely viral issue affecting the 7th and 8th nerves, which control the facial muscles and hearing, respectively)
  • Moderate hearing loss in the right ear (radiation-induced)
  • Hearing loss in the left ear (related to the facial palsy, so origin unknown)
  • Thyroid dysfunction (radiation damage)
  • Misaligned right eye (from the original tumor pressing on the 6th nerve, which controls eye movement)
  • Neuropathy-related tremors in the hands (from long-term steroid use)
  • Occasional incontinence issues (from spinal cord damage)
  • Residual unusual-looking areas in the brain, spine (likely dead tissue, scarring)
  • Minimal hair (from radiation; some grew in, but he has large bald spots)
  • Weight gain and excessive hunger (from long-term steroid use)
  • Moon face (from long-term steroid use)
  • Mood swings (from steroids)
  • Insomnia (steroids)
  • Stunted growth (spinal radiation)
  • Gallstone (from IV nutrition, which has been discontinued for a few months)
  • Tachycardia (elevated heartrate, began following first neurosurgery in August 2010)
  • Chronic cough and sinus congestion (radiation)

    Looking at this list is a devastating blow to my mommy-heart. I wonder how on earth could he ever have a normal life with these challenges in his way. But then I realize something: I'm viewing things from a human perspective. GOD can wipe away every single one of these issues in the blink of an eye and restore Logan to full health. So as the widow pestered the unjust official for justice, I'm planning to continue pestering God for justice --in the form of healing-- for Logan. It's as simple as that. And I hope you'll join me. The most critical pieces are, of course, remaining free of cancer and healing of his spinal cord. But please choose any or all of them and pray for resolution, for healing, for wholeness. For God to bring restoration as He promises to do. After all, God is the Creator of Good things. It's evil that did this to my dear sunshine. I'm asking God to show evil that He's the real boss.

  • Illness and the Zone Defense

    It's been... a day. That's about the nicest way I can describe it, and you know the old saying: If you don't have anything nice to say....

    Abby began her day by vomiting, so she stayed home from school. An hour or so later, Isaac got up, ate an eighth of a bagel and a handful of Pirates Booty stolen from the pantry, complained that the latter didn't taste right and started spitting into the toilet. Then he complained that his eyes hurt. I sent him upstairs to hang out with Abby, who was watching TV in the master bedroom between wretching episodes. Five minutes later, he too threw up. Then Brady started crying for my attention from the first floor, and Logan, who was also downstairs, also summoned me, so I spent the next few hours running back and forth between the sick ward and the well ward. And then mercifully, Adam came home and took over as the Well Ward warden, while I holed away upstairs as controller of the Sick Ward. Not my favorite post, but someone has to do it since Logan hasn't yet shown signs of illness and we must do all we can to keep him well. And given that it was me who started this whole illness business Friday night, it's fair that I take the less savory role. So tonight, the quarantined area will live on, with Abby and Isaac bunking with me and Adam taking Isaac's bed in the boys' room. (I'm guessing I'll emerge once overnight to feed Brady, of course.) And then, as always, we'll see what tomorrow morning holds.

    I'm sorry. I know some of you are completely repulsed by vomit, but it's our reality right now, and you know me: Big on the truth. (And The Truth.) Plus it hopefully has the added benefit of making you feel better about your own reality right now. :)

    Anyway, as mentioned previously, we do not want Logan to catch this bug, so please, please, please pray that he'll remain unaffected. Pray for that hand of protection upon him.

    I'll be honest about something else. It's been hard for me to ask for prayers lately because I haven't felt particularly protected despite having asked for them all along. But it certainly doesn't hurt to ask, and I'm hoping you'll oblige, and not just in the 'sure, yeah, praying for you' kind of way. No, in the 'I really and truly am stopping to pray for you all' way. In addition to restored health and healing, I'm also asking for renewed vigor and faith. Mine has waned lately in the face of so many ridiculous issues (because that's precisely what they are -- ridiculous, irritating potshots by evil) and I need invigorization. I need to see the Truth and the fiction and be able to separate them once again.

    Hopefully, after the kids are asleep, I'll return with that itemized list of needs. Thank you for your prayers. Health and blessings to you.

    Monday, December 5, 2011


    Despite what I've always been told about the nature of God, sometimes I feel like I will never, ever be good enough to believe that God is good all the time. I know that probably sounds funny. It feels funny writing it. But it's a thought that's been going 'round and round in my head for weeks now, so I wanted to get it out. You know, just in case someone else out there might feel the same way, I wanted you to know that you're not alone.

    I've been feeling particularly weak these past days, like my heart, my mind, my soul, my everything is just plain tuckered out. Sometimes, when I feel the walls closing in on me all over again --and believe me, those walls and I have been engaged in quite the Tango over the past many months-- I just find a wall somewhere, slide down it til my tush hits the turf and cry. Not because I particularly enjoy crying or because it helps me to cope any better with my less-than-envious circumstances, but because it's something I can control. At least, I can most of the time. Sometimes the tears come whether or not I want them to. But that's another bag of dog food.

    Today was an okay day. Logan went to school without much of a fight and was pleasant most of the afternoon. The left side of his face is still mostly frozen, he's still walking badly, and he's still eating like a 400-pound junk-food addict, but at least his mood was acceptable. I think I'm feeling a lot of frustration because, to be blunt, I'm tired of the battle. I'm tiring of one strike after another. And I'm tired of not seeing improvement in my sunshine. I want him to wake up one morning with a fully functional face. I want him to be able to walk without pain and without a defined limp. I want to get him off the steroids once and for all. I want so much for him. And it infuriates me that I have to sit here and watch him suffer. It kills me that I can't make it better. I envy moms with healthy kids. It's not that I want to; I just can't help myself. I can't help missing what I once had. I can't help wanting it back so intensely that the pain of the desire burns holes in my heart.

    But it is what it is. And I, at the moment, am extraordinarily weary. I need strength. I need healing for my son and wholeness for our cracked family. At some point, when I'm not so weary and when the sight of it won't break my heart, I want to type up a list of every issue Logan has right now, divide it up into sections, and ask for prayers for each specific item on the list on specific days. I know it would help me focus and not feel so overwhelmed by the mountain we face. And I hope it would help you, too.

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

    Sunday, December 4, 2011

    The Sick Stick

    My weekend of fun began at about 9 PM Friday night with an increasingly uncomfortable feeling in my stomach. It intensified until about 11 PM, when a combination of nausea, discomfort and frustration prompted me to make myself throw up. And then every 20 minutes until 5 AM, I found myself running to the restroom to toss my cookies. Almost 48 hours, several changes of clothes and a set of new sheets later, I'm no longer vomiting, but I still feel sick. Nauseated. I'd chalked the whole thing up to a piece of cheesecake I ate shortly before I started to feel ill, but that theory was shot when, earlier this evening, Brady threw up his dinner --two jars of baby food-- all over poor Adam. So, my friends, it seems as if the flu --or some other like-bug-- is upon us.

    It's really very important that Logan be spared this illness, so please, I beg you to pray that he'll be shielded from the bug. My little sunshine has been through so much and does not need the flu added to his illness resume.

    So how is he doing? Okay. He's not walking well at all, and is reliant on others to hold his hand. I don't know that he needs the help, per se, but he definitely feels more comfortable with someone helping him along. Of course I don't mind holding my little boy's hand; after all, I know there will be days down the line when he --and the others-- are long grown and resistant to doing so. But it breaks my heart to see my little dancer, my little mover and shaker, having so much trouble taking steps. It hurts me to realize that he walked better at 10 months than he does now at 5 years. But I have to remind myself that this is merely the now, and not the later. I'm working on knowing the heart of God and the truth of His healing power.

    Thank you for being a part of Logan's team and for continuing to pray for his full healing. Blessings.

    Thursday, December 1, 2011

    More Avastin and a Reflection

    Tomorrow, Logan will have his second infusion of Avastin. Although I fully believe --and am working on knowing-- that God has the power to heal him fully at this very second, I ask you to please pray that the drug will be effective. His spine needs intensive healing and the rest of his body needs protection from harm.

    I admit that I'm still a little worried because he's still experiencing the facial palsy and we don't know what caused (or is causing, given that it's ongoing) the nerve inflammation. Although Dr. T scoured the literature and never found anything suggesting that it could be related to the Avastin, my mommy's heart is nervous anyway. I thank you for praying for complete, lasting healing and for protection from additional side effects of the medications he takes.

    I have a lot I more that I could say, but I'm especially tired this evening. Before I go, though, I do want to relay a little tidbit that I off-handedly shared with a friend this morning. She thought it would make a worthy entry, so here goes.

    As a Christian, I'm very familiar with the scriptural references that tell us to come to Jesus when we're weary. In need of rest. Broken-hearted. The concept came up again during the church service this past weekend (I can't remember exactly when, to be honest; and if I'm really honest, I'm not sure if it was actually spoken aloud or if the words were merely spoken directly to my heart). When I felt those familiar words, I had my usual kneejerk reaction: But I don't want to be broken-hearted. Just as I did what I always do --tried to emotionally pull away-- I felt more words cross my heart: But you're already broken-hearted. Why do you think your heart will break even more? Come rest!

    I suppose it's a pretty basic concept: Come to Me and I will give you rest. But it's hard to do it because it's hard to admit that we're broken people; that our hearts are broken on a regular basis and that we're in need of rest. In need of healing. In need of restoration. I've spent a lot of time not wanting to rest in God because I've feared that doing so would somehow make me even more broken-hearted. It's silly, right?

    Anyway, if this is you -- if you're resisting rest because you share my misguided notion that resting shows weakness or that doing so will increase your heartbreak, reconsider.

    I'm not particularly thrilled with the way the past few paragraphs read, but the bare bones of what my heart wants to tell you is there, so I hope it speaks to someone.

    Thank you so much for being part of Logan's team, for believing that we have the power, through Christ and the Holy Spirit, to move mountains, for hanging with me even when I seem like I've left the reservation, and for believing in healing. Love to you all.

    Monday, November 28, 2011

    More of the Same

    I've not written in a while. Nearly a week, if I'm remembering correctly. Life's been something of a mixed bag since my last post and I haven't been able to muster the energy nor the desire to give an update.

    We wound up going back up on the decadron yet again on Saturday. Logan's walking had deteriorated once again, so Adam called CHO and they said to up the dose. So much for getting him OFF of it. It seems like whenever we try to wean him from its grip, something happens and we wind up not only keeping him on it anyway, but increasing the dosage. Just one of the many, many frustrations we face.

    The facial paralysis is still an issue. It's largely the same as it was last week, which breaks my heart into a million pieces. I know it's shallow, but I miss his smile terribly. It's the one thing that everyone always commented on: He's been through SO much but look at that smile! And now, at least for the time being, he doesn't even have that anymore. As far as I know, there's still no identified cause. It could be viral, it could be one of the many, many drugs he takes. It's hard to know for sure. The one thing that it could be that I find utterly frightening is Avastin. I did read, just before his MRI last week, that Avastin could, in very rare cases, cause one-sided weakness. If that's indeed the root of the issue, I don't know what we'll do. I've been praying and praying for God to just heal him already, to fix the damage and spare him yet more pain and suffering, but so far, nothing. I want to believe that as people who've been left with the Holy Spirit, we have the ability to move mountains. But thanks to some not-so-helpful stories that some well-meaning folks told me long ago, my heart won't grip onto my perceived truth of healing. It's frustrating, but I'm human. I'm weak. I have a hard time believing things that seem unlikely or, worse yet, ridiculous. If it IS the Avastin, it will take the hand of God Himself to heal his spine. I don't say that lightly, and it's true that 30 days in a hyperbaric chamber is actually the last-ditch option available, but honestly, what 5-year old do you know who'd want to do that? Not mine.

    But anyway, this is rambling. Please keep praying for Logan's healing. He's really not doing particularly well, and I have no idea how to help him or how to make it any better. He's been tormented for over a year now and I just want God to make it STOP. Evil, begone already. Begone in the name of Christ, who came to save us.

    What else can I say? Not much.

    Tuesday, November 22, 2011


    I'm a virtual fount of emotion right now, but the dominant one is joy! After a largely torturous day of waiting, a delay in Logan's MRI and then a lapse in communication between me (at home) and Adam (at CHO), we finally got a preliminary read not long ago.

    Both Dr. T and Philippa met Adam in the recovery room right after Logan had been wheeled in. Dr. T said that he saw nothing growing, and that the scan showed inflammation of the 7th (which controls the facial function) and 8th (which control hearing) nerves. He's not sure what's causing the inflammation, but said that it could be either viral, or an obscure side effect of one of the drugs Logan is on. He planned to do some more research to figure out if one of the medications might be the culprit.

    I cannot tell you how relieved we are. I have many, many thoughts on the subject of healing and our role in making it come to pass, but I'm signing off for now with a simple Thank You, Jesus. <3

    Monday, November 21, 2011


    I just came across this and it describes to a T why I keep asking, imploring, begging all of you to intercede on Logan's behalf:

    Luke 18

    The Parable of the Persistent Widow
    1 Then Jesus told his disciples a parable to show them that they should always pray and not give up.2 He said: “In a certain town there was a judge who neither feared God nor cared what people thought. 3 And there was a widow in that town who kept coming to him with the plea, ‘Grant me justice against my adversary.’

    4 “For some time he refused. But finally he said to himself, ‘Even though I don’t fear God or care what people think, 5 yet because this widow keeps bothering me, I will see that she gets justice, so that she won’t eventually come and attack me!’”

    6 And the Lord said, “Listen to what the unjust judge says. 7 And will not God bring about justice for his chosen ones, who cry out to him day and night? Will he keep putting them off?

    Rally Rally Rally...

    I posted not long ago about being scared of tomorrow and what the MRI read will hold for us. I know --and knew at time time-- that fear isn't productive. Nor is it of God. So I'm back again to ask for a renewed, strong, tidal wave of prayers for my Logan. Partly because I don't know what else to do, and partly because I believe that prayers work. I've seen what they can do; the miracles they can bring about. And I know, based on the timing of this, that the devil is hard at work trying to dismantle the good works God has done --and is doing-- in Logan's life (and by extension, in the life of our family). It's in no way a coincidence that I had such an uplifting, enriching time at church last Sunday and then found myself hit by multiple jolts of frightening uncertainty --first the unclear lumbar puncture read, and now the facial paralysis-- just days later. If I weren't so emotionally raw and worried, I'd laugh at the transparency of the evil one's schemes. Instead, I tell him, in the name of Jesus Christ, to flee from Logan and my family. And I hope you'll join with me in that prayer.

    So simply put, please pray and pass it on. Put on the armor of God and fight with us. I know that some of you are always with us in that way, but if you're new, please join in. Logan needs your help. We all do. BELIEVE.


    Entering tomorrow, I feel a lot of fear. Pure, unadulterated terror of the worst kind. I'm mad at myself for letting the devil dog me in such a petty, simplistic way, but I simply cannot put the worry to rest. I've not been able to tell it to shut up and go away.

    I guess on some silly level, I'm worried that God isn't actually in control of whatever is happening and that all of Logan's horrible suffering is pointless. I'm worried that He won't show up and help. I don't know why I stress over that; as I've pointed out here before, He HAS shown up in the past. But He's also allowed a lot of very, very bad and very, very stressful things to come to pass before swooping in and saving us. And its those times of intense suffering and pain that have done a number on me emotionally. And physically. I have chronic chest congestion and I've been dogged with tons of premature ventricular contractions (PVCs) each day. I've dealt with them for several years now, but now they're more persistent. When I lie down to sleep at night, it often happens so frequently that I can't rest; I repeatedly lose my breath and can't get settled enough to drift off.

    Lord, we need a break so desperately. We're desperate for good news about our sunshiny boy. Can You hear me?


    That's the day for the MRI: Tomorrow at 11:30. Apparently Philippa couldn't make it happen today.

    The selfish part of me who's exhausted after dealing with terrifying health problems for so long is angry that they couldn't --or just wouldn't-- bump someone with a less pressing issue. Someone who hadn't endured over a year of emotional torture and near-endless worry to get him in today. But that didn't happen so I have to get over it.

    The left-sided facial weakness definitely became more pronounced over the weekend and it affects, to one degree or another, the entire side of his face. When I ask him to close his eyes, the left one doesn't close all the way unless I tell him to squeeze them closed. His trademark grin is horribly lopsided. I've tormented myself looking for explanations that aren't frightening, but haven't come up with much in the way of comforting information. The least upsetting piece of info I've come across is the revelation that there are nearly 50 potential causes for partial facial palsy.

    I keep thinking back to when it started. It frustrates me to realize that apparently I've been less of a shutterbug over the past few weeks than usual, because there are very few photos available to help tease out the date of origin. I do have a particularly sweet one from the 9th that puts his big grin on display, but that's really the most recent shot I have available. My sense is that it began in earnest last week, after he had the lumbar puncture and his ears drained. Part of me wonders if somehow, having his ears cleaned out led to a blockage that's causing the palsy. After all, middle ear infections can lead to this kind of thing. But I don't know. And it's pointless to speculate and drive myself crazy.

    I'm really sick of the ongoing issues Logan has faced. Angry. Tired. Frustrated. Even a little betrayed. And I'm once again calling on the God of healing to show up in a mighty way for my sweet, endlessly afflicted boy.

    Sunday, November 20, 2011

    More Drama. Sort of.

    Logan's issue with the left side of his face --I'll call it partial paralysis, though I'm not sure that that's what it is-- continued today, so Adam called CHO to mention it. The fellow or resident who took the call talked with Dr. T, who decided that yet another MRI would be in order either tomorrow or Tuesday. He reiterated that the MRI from 2 1/2 weeks ago had been completely stable in the brain-area and that there was no sign of anything going on, but still, they want to take a look.

    Honestly, I don't know how much more of this I can take. My sneaking suspicion is that the devil is screwing with my emotions again. He does that a lot, and I've been trying to be more conscious of it and guard my heart from attacks. But darn it, it's hard when your child is the pawn. When your worst fears are thrown in your face over and over again.

    So anyway, please pray over this. We deserve a good report. I don't use that word lightly because I don't think we're ever entitled to anything, but we've been through enough. Logan has endured enough. He DESERVES healing and an end to these attacks.

    Saturday, November 19, 2011


    I've avoided writing for a few days now because I haven't felt like putting myself out there for inevitable criticism. I've had a hard time hacking it, so to speak. Logan's behavior during the latter half of the week was horrendous. He whined, cried, fussed, complained and yelled about absolutely everything. He asked when Adam would be home 10 to 12 times per hour and made it very clear that he wanted daddy and not me. While I do feel sorry for him because I know the decadron is brutally hard to handle, I reached my boiling point last night and completely lost my cool. Suffice it to say that there was much yelling, following by an hour sitting alone in my car and then tears. Lots of tears. And not a lot of sleep.

    I simply cannot take the abuse that he dishes out day in and day out. I called Philippa Friday to ask about getting him in to see a psychologist at CHO, and hopefully we'll be able to make that happen sooner than later. I don't even know what they can do for him. My gut is that he needs to be taken off the steroids, period. He's been on them for a long while and his personality has changed so dramatically that I know they're to blame. He's not my sunny, sweet, good-natured kid right now. No, he's my yelling, screaming, angry, verging-on-psychopathic 5-year old. It breaks my heart. Shatters it, really. Leaves me asking God when healing will come for good.

    Anyway, my heart isn't really in prayer-mode right now so I'm not sure what to ask for. Of course, healing. And I know that God does things in His own dear time, but sooner than later would be so lovely. So restorative. Also, for whatever is going on with Logan's face. The left side of his face has been more swollen than the right ever since he began taking the decadron, but lately, it's as if he's lost some of his affect. His smile is crooked and he cries and talks primarily from the right side of his mouth. (If you're wondering, the original tumor affected his *right* eye, so the opposite site.) He did just have an MRI a few weeks ago that looked fine, but it's still upsetting to see yet another odd thing happening with him. So please pray for resolution of that newer issue.

    Thank you and good night.

    Wednesday, November 16, 2011

    The LP

    I'm sorry I didn't check in earlier with the results of yesterday's lumbar puncture. I actually didn't because though we expected news all day long, none ever came. It was only this evening when Dr. T called Adam while we were out that we got the read. And of course, because this is the way life is for us, the result isn't totally clear.

    The good news is that his CSF isn't rife with disease. In fact, there was very little unusual about it. However, there was something unusual about it: A single larger-than-usual cell. He said it wasn't identifiable as a cancer cell, per se, but that it also wasn't a normal cell. So what is it, then? We don't know. His message said he was interpreting the result as negative for disease, but that there's an outside chance that the unidentified cell could be something nefarious. For now, we're continuing with the same oral chemo drugs he's been taking on and off for the past several months, and with the Avastin to help rebuild his spinal cord.

    I'd be lying if I said that I wasn't ticked off over not getting a completely clear result. I feel like we've been forced to have a magnitude of faith that far exceeds the faith that others have to have, and it's tiring. Yes, I guess we should rest in the Lord. But let me tell you something: It's hard. It's hard when things are uncertain and when you crave normalcy. It's hard when you see beautiful families with four healthy children and feel that twinge of jealousy. But as I've said hundreds of times over the past 16 months, it is what it is.

    But that doesn't mean I take it lying down. No. During my recent prayers, I've really dealt with God on the issue. I've asked Him to be true to His Word. I know that sounds horrible and presumptuous, but in a weird way, it makes me feel better. It makes me feel like I'm doing something rather than just letting life happen to me. To us.

    Thank you for continuing to pray for Logan's healing.

    Monday, November 14, 2011

    With Open Eyes

    Not much pleases me more than the times I'm able to view situations with my eyes fully open and my heart fully aware.

    As I've quietly worried over the reasons behind Logan's sudden issues with incontinence (which, by the by, appear to be improving since he re-started the higher dose of decadron), I've also tried to hold onto faith. Belief. Hope. Trust. As I again mulled the situation this morning, my mind and soul on the brink of yet another gut-busting worry session, two important memories came to mind. First, I recalled Pastor Mike's words about how evil invades and tries to destroy good works done by God, and how when positive strides are made for the Kingdom, the devil will strike back in some way. And then I remembered the post I made proclaiming that Logan would be healed because God's Word is true and He doesn't lie. And suddenly the recent issues made more sense; it was almost as if the situation came into a sharp focus. I wrote that segment on November 8, and his incontinence issues began in earnest on the 11th. Proclamation of faith despite uncertain circumstances followed by an outwardly frightening strike. Badda-bing, badda-boom.

    Tricky, huh? Not. Satan, get behind me. Get behind Logan, get behind my family and friends, and flee from here, in the name of Jesus Christ.

    I know I'm losing some of you here, but hang with me. Miracles will happen right here. The path of life --and indeed, Life-- isn't always an easy one, but we'll be singing a victory song here soon.

    Sunday, November 13, 2011


    It's been an enlightening 24 hours.

    For the past few weeks, I've been begging God to speak to me. To comfort me. To show up. My pleas were met with much silence, which is utterly maddening when your breaking point is near and you crave reassurance from the only One who can truly provide it. Little did I know that a virtual avalanche of comfort and reassurance was in store for me.

    It all began about 24 hours ago, after I posted my most recent entry. I felt tired, dejected, frustrated, and generally ready to give up. It was then that a friend of a friend, a person I've never met in real life and couldn't pick from a line-up, asked me to give her a call. After much internal debate and an 'okay God, if this happens, I'm going to call this girl' moment, I dialed her digits and we had a long conversation. We talked of faith and healing and standing strong on the Word. Of being different because life requires that we be different. Of having faith that looks crazy to most. It was an inspiring, faith-building talk, and I'm grateful that she made herself available to me when she didn't have to do so.

    Then this morning, we headed to church en masse for Brady's baptism. I haven't really been interested in church lately. In fact, the last time I went a few weeks ago, I wound up sitting through 10 minutes of worship before I couldn't take anymore. I spent the rest of the service sitting awkwardly in the back of my van, wedged between the seats so no one would see me crying. But today was a big day in the life of our family, so I approached the service with the door of my heart open just a crack.

    Our family of six herded to the front of the room for the sprinkling, and then we returned to our seats. A few minutes later, our pastor (per a hastily-made arrangement) approached Logan and Adam where they sat, and the entire church prayed over him. For healing, for restoration. For the kind of wellness and the kind of wholeness that only God can provide. As I stood on the side aisle holding my squirmy, wiggly Brady, I tried to let the words seep into my soul; I tried to let them penetrate that tiny crack in my heart. I tried to really believe them, to own them. It too was a comforting experience.

    But the real meat of the morning came with the message, which focused on Nehemiah and dealt with spiritual warfare and battles. I don't know that I've ever absorbed the words of a sermon so fully. I was like a sponge, nodding and agreeing with so much of what was said, scarcely able to believe what I was hearing.

    And it's not because I ever thought I was wrong about spiritual battles in this world, but because God actually met me where I was. He showed up. He chose the one Sunday when my presence at church was guaranteed. He spoke a powerful Word into my life through our pastor; a Word that I'd heard before but desperately needed to have reaffirmed. I needed to be reminded that what we're dealing with here is a battle that's spiritual in nature. I needed to be reminded that in order to defeat evil, we have to recognize that it's there and fight it. I needed to be reminded that God is on my side, on Logan's side, and that though we face setbacks and frustrations, God IS the victor, in the present tense.

    So I ask you all again to don your armor for my sweet sunshine and fight the battle on his behalf. I refuse to simply put my head in the sand and pretend that evil doesn't exist, because that's the easiest way to lose a war. No, I ask you all to join me in prayer and fight against it; to say 'get behind us, Satan, in the name of Jesus'.

    I realize that this will make me sound crazy to some of you, but what's new? Part of faith is being unafraid of looking a little nutty to onlookers. It's my prayer that those of you who are with us fighting the fight will be strong, protected and willing warriors. Blessings to you.

    Saturday, November 12, 2011


    I haven't had a good day. I'm disappointed in myself for not being able to overcome the fear and anger and resentment, but I know that I need to cut myself some slack. I am not, after all, a superhuman. I'm just your average mom stuck in what amounts to hell on earth.

    Adam called CHO after a few hours had passed and we hadn't heard back, and we were told to increase Logan's decadron level. To its original dose. I feel so defeated and angry over this. Why is God not healing my son? Why is He letting this happen? Why is life so hard for us? Why are we being forced to put him back on the drug that I hate more than any other drug in existence? The one that makes him moody and unable to sleep? It makes no sense to me. I can't make it make sense, no matter how hard I try.

    Were I a wiser, more positive, more faithful person, I might go back to something I wrote long ago and say that it's all okay because bad circumstances just give God a chance to show Himself in undeniable ways. But I'm not that person anymore. In some ways, I'm better. In others, I'm horribly, inexorably jaded. I've seen suffering in the face of my own flesh and blood; in the eyes of one I carried in my own womb. Headlines alleging child abuse and discord make my stomach turn in ways I can't describe; they bring about a sense of rage that's hard to quell. Why are babies dying at the hands of the people who are supposed to love and protect them while I'm struggling --sacrificing just about everything-- to keep mine alive? There's no justice. There's just no justice, no fairness, no equality in this world. I used to think there was, but now I know better.

    One of the things that makes me maddest is not knowing why he's lost bladder control. Is it the radiation damage, or is something else going on? I wish they'd image him so we'd just know, once and for all, what exactly is going on inside his back. I hate not knowing. Adam said I could call and share that with the doctors at CHO, but I refrained, in part because I can't hear well right now (courtesy of my ear infection, which currently has me deaf on the right side) and in part because I'm not good at asserting myself.

    Sigh. I guess have nothing truly productive to say. I feel, once again, as if I'm going out of my skin. And I'm waiting on God to do something truly mighty, monumental. I'm not a terribly vain person nor do I feel entitled, but damnit, my son deserves better than this. My other children deserve better than this.

    Something Scary this Way Comes

    Our weekend hasn't begun in stellar fashion. Quite the opposite, really. When I got up this morning, Adam was on the phone with CHO. He shared that Logan had wet the bed twice overnight, and then peed in his pants once this morning. He said that when he suggested wearing a diaper, my independent little sunshine cried pitifully, mournfully. So right now he's still in underpants, but I know the time will comes --soon-- that he has to move into PullUps. It breaks our collective heart; he deserves a little dignity and now he has none. The one remaining shred of independence, and well, yes, dignity, is gone.

    The on-call doctor Adam spoke with said she would attempt to get in touch with Dr. T. but that she assumed we'd need to go back to the original dose of decadron to control the symptoms. And my heart just fell through the floor. Why oh why is our life on earth like this? Why, God, why? I know no one can answer these questions and frankly, I don't want any of the pretty niceties thrown my way right now. It is what it is.

    The reason for the relatively sudden loss of bladder control is fuzzy. It could well be the progression of the spinal cord damage manifesting symptoms, which it hadn't really done, other than his limp (and the relatively recent inability to lift his left leg as high as his right). It could also be something more nefarious that's taken root and is causing the problem. Both ideas make me lose my breath, but the first is by far the preferred, because it can be treated.

    I'm angry. Sad. Frustrated. A lot of emotions that I'll probably play down just to keep the ongoing spiritual war within my own heart at bay. I will say that as I sat down to nurse Brady and Adam talked on the phone, I felt words appear on my heart: Don't be scared. A few days ago, I awoke in the morning feeling a sense of worry, because similar words had imprinted themselves on my heart as I got dressed: Don't be scared of anything scary that may happen. Even through my frustration, I remember those words and the ones from this morning and they do offer a modicum of comfort.

    What they cannot do is unbreak my heart for my child. He's suffered so very much. He's weathered more than most people of more advanced age could tolerate. Though he's not the same little love he was 16 months ago, we still see glimmers of his true soul at times. Yesterday afternoon a switch flipped and he played cheerfully with Brady for 15 or 20 minutes. Peek a boo, making silly faces. And using, for the first time in a long while, his silly Ponow voice. (Ponow, in case you're unaware, is the name of his 'home planet'. It's a long-standing joke that originated long ago when he would make silly sounds and noises. When we asked what he was doing, he'd simply talk about Ponow.)

    I realize I skipped an update a few days ago, too. He saw Dr. T and a few others on Thursday at clinic, just to be sure that his excessive tiredness and his clearly infected ear weren't a worrisome thing to them. He was cute and interactive while there, so we went along our merry way to see the ENT. Logan resisted having his ear cleaned, so Dr. W said he'd need to clean it out while Logan was under for a few minutes. So this Tuesday, he's scheduled to have his ear thoroughly cleaned (which will hopefully help with his hearing, which is awful right now). He'll also have a lumbar puncture at the urging of Dr. F, the L.A. based doctor who developed the Headstart protocol. He reviewed the images, and wanted to be certain that the radiation damage is indeed radiation damage and not some other sort of infection. And of course, the LP will also tell us if there are any free-floating cancer cells in his cerebrospinal fluid (CSF). Lord, I pray not.

    So that's where we are. Kind of ironically, Brady's baptism is scheduled for tomorrow morning. What I feel like I want now is for the entire church body to lay their collective hands on Logan and pray for healing. Once and for all. I know healing isn't ever really a once and for all kind of thing, but I know it's possible. I know it could happen. My faith is wavering mightily, but I still have a mustard seed. And that's all we need.

    Tuesday, November 8, 2011

    What *is* Faith?

    I feel squirrelly today. The restlessness is probably a direct result of my morning coffee and codeine cocktail, but it has my mind churning and alive with a host of thoughts, both fleeting and more pointedly persistent.

    When I heard the news of Michelle Duggar's 20th pregnancy, I took pause and reserved judgment as I contemplated her family's life of faith. While I'm not certain that their interpretation of the scriptures is entirely sound, I do have a great respect for the way they put their faith in God. It looks completely insane to most onlookers, but it's an admirable example of faith in action.

    And then I wondered: Is it possible for me to live that kind of life of faith? Is it truly possible for me to embrace the healing scriptures, to own them, to truly believe that my faith --my deeply flawed, purely human faith-- can move mountains? It's hard to believe in something we cannot see. It goes against every human inclination, every need to have proof and evidence. And it's scary to put yourself out there.

    I've repeatedly fallen short of making the grand proclamation that my heart so badly wants to make. Every time my fingers start to graze the keyboard, a voice whispers but what if you're wrong? What if God doesn't show up this time? And it stops me. And I retreat.

    But not this morning. No, this morning I'm going to make the declaration, realizing that the road of faith is filled with potholes large and wide enough to swallow strings of passenger airliners.

    Logan will be healed. The mountains will move. He will grow up with his siblings and have a huge impact on this world as an adult. The enemy will try to stop all of that, but God is bigger. And you know what? God will show up, because He always does.

    Can I get an Amen? And some prayers from Logan's warriors? Because we need 'em all. Thanks. And blessings to you.

    Monday, November 7, 2011

    Send Help... A Note for the Prayer Warriors

    After the events of today, I have to assume that it's game-on time once again for Logan's prayer warriors. First there was the pic line getting kinked and needing to be removed, which necessitated an unscheduled trip to CHO. Then there was the whole peeing in the pants incident that scared me to pieces. When we got home from CHO, I retrieved the deck of healing verses a friend sent to me, and prayed them over my sweet boy. Just a few hours later at 4:45, I started to feel some prickling sensations in my right ear. By 5, I knew it was infected. I was fortunate enough to get an after-hours appointment with my doctor, who confirmed that my eardrum was red and bulging (and was duly impressed by how quickly the symptoms appeared to plague me). She gave me three prescriptions to fill -- an antibiotic (which is challenging, since I'm allergic to penicillin and sulfa drugs and I'm nursing Brady), Tylenol with Codeine and numbing ear drops. The pain was so intense that I cried while I drove to the pharmacy and then could hardly sit still while I waited for them to be filled. I had Adam instill the drops as soon as I got back, and popped the other two pills. It's been about 15 minutes now and I'm still waiting for marked relief.

    Anyway, I'm taking the opportunity to call all of Logan's true prayer warriors --and you know who you are-- to take up your armor and get to work. I feel like we're again under attack --or at least, I am-- and we all need extra protection. I know that some of the things I say about spiritual battles seem a little odd to some of you, but I know we're in the middle of one, and I must assume that things are progressing in the right direction for my sweet boy if I'm meeting so much resistance.

    Thank you for being a part of Logan's team. And stay tuned: I continue to believe that great things are in the works here for my dear Logan, even if the road isn't what I would've chosen for my family.

    Because 'Peace' is an Elusive Thing...

    Logan's pic line refused to draw this morning, so I had to pack up all three boys and head northward so Philippa could check it out. She tried it herself and it didn't work, so she sent us off to x-ray so the line could be imaged. And that's when my whole morning changed and my peace was, once again, shot down, just as it's been month after month after month (after month).

    Logan went into the room to have the x-ray done, but when he emerged, he tearfully told me that he needed to change his pants. A bolt of sheer terror pierced my heart: He'd had an accident. A pee-accident.

    For the mom of a normal 5-year old boy, this kind of thing will typically elicit one of two responses: Either a 'darn it, why did you do that?' form of consternation, or an 'okay, well, that's no big deal, let's get you cleaned up' nonchalance. But not for me. For me, I have to wonder why it happened. Did the decrease in decadron allow the spinal inflammation to kick itself up a notch, thus affecting his ability to sense the urge to go? Or was something more sinister behind the accident? There's no way to know, and it's maddening. Heart-rending. Just so unbelievably hard.

    I told Philippa, and her first response was that perhaps we'd have to go back up on the steroids to reduce inflammation from the radiation damage. I told her that was fine, if it's what's needed; I also told her that we weren't terribly concerned about the radiation damage. She cut in and responded in like kind, noting that it's treatable, whereas the other possibility... well, there's not a lot more that can be done.

    As I drove home, I tried to quell my sense of panic by repeatedly begging Jesus to cloak Logan in His healing power. The entire way home, from Oakland to our driveway, I begged and pleaded for that touch, just as I've done every hour of every day for the past 15 months.

    Right now, a few hours removed, I feel uneasy. Not overwhelmed by thick panic as I was earlier, but uncomfortable. Displeased. Frustrated. Scared. I don't like not knowing what's going on inside his precious little body. And honestly --and please don't be offended by this-- I also don't like being reminded that God is in control, that He has such an awesome plan for us, yadda yadda. We've been jerked around a lot lately. I'm not saying I don't believe that it's true; I'm just saying that what I need from you are prayers for healing and not reminders and notes suggesting that I should just lie back and acquiesce to whatever happens. I'm fighting for Logan's life here on this earth and I plan to keep right on doing so, petitioning and begging and trying my very best to believe.

    Oh, and the pic line? Philippa pulled it out. It was kinked and no longer usable. Go figure.

    Sunday, November 6, 2011

    Dancing and Stuff

    Oh Sunday evening, you've come much too quickly for this tired, taxed soul. Just a few more hours and yet another week begins.

    Today was actually a decent one for Logan, better than most of the previous 30. Although he was cranky this morning, by the time I returned from dropping Abby and Isaac at Sunday School and picking up a new thermometer and a few Halloween clearance sundries from the store, he was chipper. Cheerful. Vintage Logan. He was especially pleased with the cupcake liners he found in my bag of goodies. So much so, in fact, that after I returned home from retrieving his siblings from church, he stood atop a step-stool in front of the stove, carefully using a spoon to drizzle holiday funfetti cake mix into a cupcake pan. Adam shared that he'd gotten out the supplies by himself; he disappeared into the pantry and emerged a few minutes later clutching the cake mix, and he opened the cupcake liners -- all three bags -- and placed them in the pans (both regular-sized and mini versions) all by his lonesome. It did a mommy's heart good to see such determined ingenuity at work. After they finished baking, he eagerly popped open a can of orange frosting and asked for sprinkles. He wound up licking the frosting from the top of his cupcake and leaving the cake itself behind, but I had one and let me tell you: A cupcake from a box never tasted so good.

    He managed to stay awake through most of the day. He even engaged in his first mini-dance party in over a month. He asked Adam to turn on Abby's Good Ship Lollipop recital, which always inspires his best moves, and sure enough, he busted a few of 'em before tiring out. His desire to keep dancing was stronger than his body's ability, though, so the party didn't last long. But it was a step forward. A step in the right direction. And after so many steps forward followed immediately by steps back, it was a nice change. A proud moment for me and a moment of great relief, since I didn't know if I'd ever see him dance again. I don't get to feel proud very often these days, so I treasure the scant moments when I do.

    He finally got tired and started asking to go to bed at about 6, but we did our best to keep him awake until 7. It's hard to be so exhausted, I'm sure.

    Thank you for being a part of Logan's team. Please keep praying for his healing. And on't just pray for it -- believe that it will happen. Believe in healing; complete, full, lasting healing. Believe in Mark 11:22-24. Believe for all of us. Believe for Logan. Believe for your own circumstances, whatever they may be. Believe that when you say God, please show up here, He will. And in amazing ways. Good night, and have a blessed evening.

    Saturday, November 5, 2011


    Ah, the weekend. I'd been looking forward to it since... well, Monday morning, to be honest. And following an unprecedented good night of sleep by Mr. Brady --not a peep from 9:30 PM til 6:30 AM-- I was hopeful that good things were in store. And they were. Sort of.

    Today marked Logan's first 'no decadron' day. Dr. T said that we should go to an every other day schedule to try to help with the hideous side effects we've been seeing --moodiness, joint pain, bone pain, headaches... the list goes on for pages-- and today was the first day he didn't have any in nearly two months. It started off well enough. He wanted to go to Fresh Choice for lunch, so we did. He ate a decent meal, and then we wandered to the centercourt overlook to gaze down at Santa, whose sleigh has already dropped him off at the mall for the holiday season. Ordinarily we'd be irritated by the early start to the fa-la-las, this year, as Adam said, it comes as a welcome change to the routine. After all, there are worse things than enduring 24 hours of cheerful music a day.

    Then we headed to Target to pick up a few choice items. And sometime between the trip home and the middle of Cars 2 (which Logan was thrilled to pick up at Tarjay), the worm turned and he became a whiny, fussing, crying mess. He tried to take a nap but had little success; he's had a horrid time sleeping since starting on the steroids. Adam said he was up repeatedly last night, so of course he's exhausted and his sleep schedule is completely out of whack. Anyway, he awoke from a brief rest period screaming that his ear and his tummy hurt. We gave him some Tylenol, but he continued to scream that he wanted to go to the hospital so Adam and I took turns trying to calm him down. It's not a new thing for Logan to respond poorly to not getting enough sleep. Dating back to his infancy, he'd cry and scream when awakened from naps too soon. But that didn't make the sustained, ear splitting outbursts less painful or less pleasant. Or more acceptable. It's hard for me to keep my composure and not get angry when he lets loose. I am, after all, merely a person. I have no super powers of patience nor is it natural for me to heap generous doses of grace onto people who irritate me to no end. It's not that I don't understand that he feels awful; I certainly do. It breaks my heart all day, every day. But I am, as I said, just a person. And it's hard.

    Anyway, Adam finally relented and let him go up to bed at 7. Hopefully, he'll sleep tonight. And hopefully Brady will have a repeat performance of unprecedented sleep-greatness. Because I cannot impress upon you how utterly draining this experience is when we're sleep deprived. Everything is harder, more challenging, more frustrating, more grating.

    I think that's all I'll write for now. I could go on and on, but I'm tired and I never know how long I'll get to rest before someone short and demanding (but of course, also wonderful and precious) will wake me up. Thank you for continuing to pray for Logan's total and complete healing (because hey, you have to ask if you want it...) -- of the questionable spot on his spine, of the spinal radiation damage, of the aspergillus infection, of his tummy pain, of everything that's causing him discomfort. He deserves better than this. Thank you for interceding for us. Good night.

    Friday, November 4, 2011

    11.4 Clinic Visit

    I'm battling either a cold or a pretty bad allergic response to something; I'm thinking it's the latter. It began, oddly enough, two days ago as I was reading healing scriptures over Logan. Yes, totally serious about that. I was literally reading Mark 11:22 and by His stripes you are healed when my allergies went berzerk out of nowhere: Sneezing, watery eyes, sinus pressure, congestion. It got so bad so quickly that it was hard to talk. Coincidence? NO way. Just another little reminder for me that this is a spiritual battle. But anyway.

    This morning was Logan's oncology clinic visit. Adam and I dropped Abby off at school at 8:10, and then headed north to drop the littler boys off at grandma's house. Then it was westward to CHO. They were running more or less on time --which is something of a miracle-- so we were in a room with Dr. T and Philippa fairly quickly.

    As expected, Dr. T noted that there were two issues with the MRI. He touched first on the radiation damage along his spinal cord. We discovered that the damage was not only unimproved, but had worsened significantly in the past weeks. It now extends high enough into the upper vertebrae that it could impact the use of his shoulders. It's absolutely chilling to hear a medical professional say something like that about your child's basic functionality, especially a child who was once a singing, dancing, running fool. As expected, he wants to start him on Avastin to help the spine to repair itself. It's not used terribly often for this purpose, but there's good clinical data that says it's a very effective means of treatment for spinal degeneration -- 50 to 75% of patients see a marked improvement in tissue quality within 4 weeks. Since he had the surgery on his mastoid bone just 11 days ago and Avastin can cause issues with wound healing, we'll wait another week and some change before starting him on it on or around the 14th.

    This led us to the discussion of the other potential issue discovered on the MRI: The area in his spinal nerve fibers that may or may not be showing increased enhancement or growth. He shared his opinion that the area was unchanged from previous scans, along with the radiologist's differing opinion that it's not the same. The brass tacks of it are that the MRI data is so detailed, the shots --from one session to the next-- are never taken from exactly the same perspective (meaning that if he's lying a half of a centimeter further to the left, it can change the appearance of the films), and the spot is so small that it's hard to tell for sure if there's a real difference. And there's not really a way to tell. The area in question has consistently enhanced over the past several months, but it had been unchanged. Dr. T still thinks it's unchanged based on his read; the radiologist isn't so convinced. So, we just don't know for sure what the reality is here. And as Dr. T explained, Avastin is also an effective means of controlling tumors --there's not really any data on AT/RT, per se, but it's worked for medullablastomas, of which AT/RT is a relative-- so it could have the double punch benefit of repairing the spine *and* protecting against tumor recurrence.

    Think that's a lot to read? Try digesting it while you're looking at your kid, a.k.a, the guinea pig of discussion.

    So for now, we're just biding our time and praying that Dr. T's interpretation is the right one. He was up front about saying that they just don't know, but he was also up front with his opinion that the area was unchanged. He said that he would've expected to see more than just a tiny change if the disease was recurring, but again... we just don't know.

    In positive news, he shared that his brain --where all of this began 15 months ago-- is stable, per the MRI. Thank God! As we headed to retrieve Brady and Isaac from Adam's parents' house, I remarked that there's a great deal of irony in the fact that we began with a huge tumor in his brain, but our problem now is with his spine. It's almost as if we concentrated SO much prayer in his head that we forgot about his vulnerable spine! I don't say that in an accusatory way, nor do I feel like I did anything wrong in requesting prayers last year. No, in fact, I'm encouraged: I asked you all to pull out all the stops and pray for healing in his brain, and it happened in amazing ways. So now, a year later, I'm asking you once again to pull out all the stops for his spine. Please ask for complete and lasting healing of his spine -- for protection from the return of disease, for healing of the radiation-damaged spots. And of course, please keep that blanket of protection over his brain as well. When it comes to my sweet boy, I can't leave any stones unturned or any vulnerable areas uncovered.

    Thanks for hanging with me through this loooooong update. And THANK YOU for praying for Logan's healing. Have a great night.

    Thursday, November 3, 2011

    Uncertainty, Sustained.

    You know, kind of like Girl, Interrupted. But mostly different. It's just the theme of our life on this earth so it seemed an appropriate, if not tongue-in-cheek title.

    After a mostly sleepless night for Adam and I, we got up this morning as usual, slapped cheerful expressions on our wan faces, and sent our birthday girl off to school. Then we decided that Logan would, despite many protestations, go to preschool, so I loaded up all three boys and headed out. I dropped Logan off first; he clutched his lovey, Lambie, for dear life as I carried him into the classroom. Even once we were inside, he maintained a sulky, serious expression and stood still in the middle of the room. He didn't make a beeline for the writing center as he usually does. I left, and dropped Isaac off at his classroom. I hung around for a little while talking with Kelly, the director, and she watched Brady for me for a few minutes while I watched Isaac's class take pictures with the visiting pony, Popeye. I couldn't find Kelly and Brady post-pony, so I headed over to Logan's class, and sure enough, my sobbing baby was sitting at the table with my 5-year old. Kelly told me a sweet story from minutes earlier: Upon seeing Logan, Brady toddled over to him, and Logan told his baby brother that it would be okay; that mommy would come back for him. I so love that child. Then I headed off to the dentist (and if you've never had a cleaning with a squirmy, tired, cranky 10-month old perched on your lap, you haven't truly lived; I'm happy to lend mine out to locals who'd like to experience that brand of joy). And then it was preschool pick-up time; Logan fell asleep on the carpet and was still out cold when I arrived. Isaac, of course, was wide awake and bouncy like a rubber ball. Then we went to lunch at a local pizza joint, where Logan inhaled a lot of pizza and Isaac oohed and aahed over the selection of arcade games and toy machines. Then it was home to wrap presents and bake the cake. Then it was Abby pick-up. And soon, I'll have the tricky task of getting Abby's birthday photos taken and then whisking her off to her dance class lickety-split. And there's more. I write all of this not because I think anyone is especially interested in the minute details of my day, but because I'm interested in those details; those boring little tidbits that are so precious but often so forgotten in the face of 'big events'.

    So anyway. In the midst of all of that busyness, Philippa called. I didn't answer my phone because I didn't hear it ring, but the reality is that I wouldn't have answered it anyway. When I got home, Adam shared the content of the discussion he'd had with her. The short of it is twofold. One, everyone who's seen the scans agrees that the spinal damage from radiation is the same, if not a little worse. But certainly not any better. It's disappointing --crushingly disappointing-- that the torture he's suffered at the hands of Decadron didn't have any visibly positive effect on fixing the problem. It means that he'll likely start on the drug Avastin, which is most commonly known as a breast cancer medication. It has, curiously, been shown to have restorative qualities for damaged tissue. As thrilled as we're NOT about starting another new drug, at least it presents the possibility that his damaged spinal cord will eventually repair itself. The huge downside is that as of now, they want to keep him on Decadron. We really don't want this, as it's already responsible for dramatic changes in him. He's simply not who he once was, and it's crushing to see him morphed into someone else. Please, God. Please. So please pray over that. PLEASE.

    Two, per Philippa's interpretation --and they're VERY careful with communication when it comes to Logan, since we've had a few bad experiences-- the news about the enhanced area on his lower spine in the nerve fibers may not be what we'd feared. Though the fellow who called us last night told Adam that it was a NEW spot that hadn't previously been enhanced (hence the concern), Dr. T. wasn't in agreement. Philippa's interpretation of her conversations with him on the subject were that the spot HAD shown up in previous MRI scans dating back several months. As a result, as of this morning, he considered the scan to be stable in terms of the presence of active disease. Of course, he was continuing in the process of seeking out additional opinions and taking more detailed looks at the scan and the previous scans. Philippa also noted that if there is something going on, it's not necessarily the same kind of disease he's had before. His spine is a complete wreck, and it looks weird. It's looked strange and weird and unusual for months now, but the important note is that it's always been consistent in its strangeness. We don't know what to make of it or who to believe. Do we believe the radiologist, who thinks it looks different, or Dr. T, who doesn't? It's frustrating. Maddening really, that two medical professionals can look at the same set of films and see two completely different things. But as I've said hundreds of times over the past 15 months, it is what it is. And we wait.

    Logan has a clinic visit tomorrow morning, and we'll get a chance to hear what Dr. T has to say about everything --the spinal damage, the spot, and all of the symptoms. I did learn that his hemoglobin yesterday was back up to 9.5, which is still low but better. And curiously, his TSH (thyroid) level was just a hair high, so it's likely not responsible for his extraordinary tiredness. I could go around and around in circles, trying to understand the symptoms and connect the dots, but I'd go crazy doing so. There are a lot of numbers and a lot of side effects and a lot of symptoms to sort through.

    But the one thing that we desire is healing. I said many months ago that the ONE thing that will matter for Logan is the hand of God touching him and bringing about lasting healing. Even in my exhaustion, frustration, anger, hopelessness... I still believe that's true. I still believe that in order to receive healing, we have only to ask. So that's what we're doing: Asking. Trying hard to believe, even in the face of yesterday's disappointment. Trying very, very hard to hold on to faith.

    I know that I ask you to pray every single time I write. I've posted to Twitter, asking friends and people I don't even know to repost and ask their friends and neighbors and strangers to pray and repost. What I cannot do is express the absolute desperation that I feel when I'm looking up the names of new celebrities --people with huge audiences and hopefully big hearts-- to beg for their help in spreading the word. I know it sounds pathetic. I'm embarrassed to admit that I do it. But I do it for my Logan. I do it because he's WORTH the embarrassment. Because no matter how hard I try, I know I'll never be able to adequately convey the depth of my sorrow and compel them to repost and ask others for prayer. I know: It's risky to do that. It's scary to say 'hey, I don't know this person, but her kid needs help. Pray for him.' I do it because I believe in the power of prayer and in intercession. Why else would I post publicly? I do it because we need help, plain and simple. I can pray and pray and pray, but we need help from Logan's army.

    So that's the update for now. Thank you for praying for us and for my sweet Logan. Believe for him. Please: Just pray and believe. Healing is available. After all, ask, and you shall receive. Seek, and you shall fine. Knock, and the door shall be opened unto you.

    Wednesday, November 2, 2011

    November MRI and Heartache

    Someone called with a preliminary read on the MRI, and it's not a good one. I'm feeling a lot of emotion as I type; wondering if everything I've believed in is even real. Wondering why these things keep happening to my precious family. But above all else, I'm holding on, by the tips of my fingernails, to the notion that God is good, and that He will ultimately bring healing to my sweet little boy.

    The short of it is two-fold. One, the radiation-damaged areas on his spinal cord have not repaired themselves as we'd hoped they would. And two, there's a spot in the nerve fibers low on his spinal cord that's enhancing. I don't really have to tell you all what that may mean. There's no official word on what it is yet --that'll come sometime tomorrow-- but the reason the hospital called was to ask if he'd had any recent or sudden issues with incontinence (no). If he had, they'd have had him go in for a steroid shot. (Because of course, he hasn't already been pumped full of enough steroids at this point.)

    So there you go. I'm utterly devastated. My heart is breaking into a million pieces, but tomorrow is Abby's 7th birthday so I have to hold it in; save the crushing emotion for a more convenient time.

    It's true that we don't yet know what all of this means. Or what it is, for that matter. The person who called said they weren't happy to see the spot enhancing, but she added that the radiologist was still completing the read so there's not yet any official word. We knew that there was a good chance that he'd need to move on to another course of treatment for the spinal injury; the notion that something else may be going on is simply too much to bear.

    PLEASE pray for us. If I could write pray pray pray pray pray for healing a million times over, I would. Pray for my sweet, wonderful little boy who deserves better than this. Pray for that miraculous healing that I just know is available for anyone who reaches out and asks for it. Pray that the Holy Spirit will fall afresh on him and make him WELL; heal his little body and restore him to our family.

    Thank you.

    Tuesday, November 1, 2011

    Tuesday Reflections

    When it comes to faith, I've always been something of a casual dabbler. I think that in a way --regardless of what we may think we do or don't believe-- we're all dabblers, to a certain degree. It's entertaining to dangle our toes in the river of belief to see what might happen; to see if the things we can only dare to hope may happen will actually come to pass. But there's a profound difference between allowing the waters to glance against your flesh and immersing yourself in the waves. It takes a lot of courage to do the latter. A lot of courage and a lot of belief.

    Over the course of the past 15 months, I've allowed the water to tickle my toes and my legs. At times, I've even allowed myself to get in waist-deep. But I haven't really taken the big dive.

    Nope, I hold back. I stay dry. The times that I've let myself hope and have faith, real faith, I've not been disappointed. No, in fact, some pretty amazing things have come to pass as a result. So tonight, the night before Logan's next MRI, rather than stress over the scan, I'm going to get into that water. I'm going to proclaim that Mark 11:22 is true. I'm going to ask that you believe it for Logan, too. I'm going to have faith, even though I'm human and my heart and mind are weak and prone to overwhelming, gut-busting worry.

    Why? Because awesome things happen when we get in the water.

    Thank you for your prayers.

    Monday, October 31, 2011

    More Prayers Please

    It's like a never-ending battle for us.

    Logan just isn't feeling well at all. He's extremely tired but unable to sleep at night, his blood count numbers are screwy, he has no energy and he's gone back to limping. I don't know why any of these things are happening and honestly, I guess the 'whys' of it don't really matter. Just as I did last week, I'm asking you to once again pull out the prayer stops for my sweet boy. Here's what we need:

    1 - An increased hemoglobin number. I was surprised to find out this afternoon that his # on discharge was only 8.2. This is a very low figure for him, since he'd previously had figures in the 10s and up. We'd like to see that number rise to or above 10.

    2 - A better TSH number. When it was initially tested, his thyroid stimulating hormone # was way, way too high; over 21. This can cause tiredness, lethargy, and a general ill-feeling. A lower number means a better functioning thyroid. Logan's was damaged by radiation, and though I'm not on the best of terms with God right now, I DO acknowledge that He can fix all things. Please ask for that. And for the correct dosage of medication to help him feel normal.

    3 - This is a huge one: A clear MRI on Wednesday. To be blunt, decadron is absolutely ruining our lives. He's been on it for a month and a half now, and it's changed him for the worse in many ways. His personality and temperament are different, his outlook is different. He feels joint pain and restlessness. I understand that it's needed at times, but it's a miserable drug to take for an extended period of time. Please PLEASE pray that the scan will be clear, the swelling will be gone and that the team will be able to comfortably and completely wean him from it.

    4 - For complete eradication of the Aspergillus infection.

    5 - For health. Logan isn't feeling well. Between his low hemoglobin to the bad thyroid to the steroids, he's suffering. Please pray for health and for sustained healing.

    6 - And one last thing I'm editing to add: For resolution of his gallstone. I don't know for sure, but I suspect that his periodic cries of pain in his stomach/abdomen may have something to do with its presence. Please pray that it will just GO AWAY.

    Thank you for praying and for reminding your friends to do so and for passing word forward to others. My little man deserves better than the lot he's drawn. And I beg you to beg God to ask for better for him; I beg you to join me in moving the mountains that keep popping up for our family. We need help.

    Saturday, October 29, 2011

    A Heavy Coat

    On days like today, the pain and heartache of all we've endured over the past 14.5 months rips and tears into my personhood, into the very essence of who I am on this earth. I suppose that sounds dramatic, but unless you've been me, I can't make you understand the depth of my frustration and disappointment and honestly speaking, hopelessness. Sometimes it feels as if there's a heavy winter coat weighing me down.

    There was nothing particularly monumental or unusual about today. In fact, it was 'just another Saturday', and included a few of our normal ho-hum weekend activities, including lunch at Sweet Tomatoes (Logan's favorite haunt) and a trip to Walmart.

    So I guess it was something about the conflation of what normal used to be -- 15 months ago -- with what it is now. There's something so intensely painful about comparing those two realities that I can scarcely breathe when I think about the contrast. It's like comparing fresh, untouched, purely alabaster skin with sun-scorched, blistered flesh. It's days like today that have a way of reminding me of what we've lost, of how our innocence has been torn away. To put it simply, my heart hurts.

    I get upset whenever someone says 'well, you should just be glad Logan is alive'. Yes. Of course I am. I've seen amazing things happen. But at the same time, I don't think it's realistic to expect me to just be thankful for those things without feeling sad sometimes. After all, it's MY son who's barely recognizable thanks to steroids. It's MY son who can't dance because his legs are too weak or because of spinal issues -- not sure which; the MRI this coming week will tell us what's going on. It's MY son who's become a whining ball of complaints. He's not the same child he was 15 months ago. Cancer --evil-- took that away from us. I mourn the loss of that sweet boy, and I wonder if he'll ever be back. I don't know if God will restore him or not. And that breaks my heart, but the Logan I once knew was truly one of the best kids on this planet. He's still here, but his spirit is wounded. He's more cautious, less outgoing, more worried of what others think and less silly and carefree. It's true that he may have naturally evolved into the person he is now even without the scourge of disease, but I don't know. All I DO know is that the past year has changed him, and I'm sad over it. And I'm allowed to feel sad over it without anyone telling me otherwise.

    I guess this isn't saying much. I have no pretty words to share nor any great observations, and certainly no grand proclamations of faith or hope. I feel tired and defeated and alone. And I write because long ago, I promised to be honest with you. So here I am.

    Thursday, October 27, 2011

    Home Again

    There was a pleasant surprise awaiting me when I arrived at CHO this afternoon to sit with Logan: His discharge instructions were in the works! Adam packed up his things and took them out to one car, and then headed home in the other to do some work. Logan and I waited around for an hour or so for the pharmacy to ready his prescriptions and Philippa to come by with said discharge paperwork. I John Hancocked the form, went over the meds list, and Logan gave a good hug to Molly --who told him that he's her favorite little boy in the world and that she loves him-- and we were off.

    Thank you for all of your prayers, and please do keep them flowing steadily. I'm amazed and humbled by how quickly Logan has rebounded from the aspergillus, and am so grateful to all of you for appealing to God on his behalf. Just a short entry tonight since I'm completely exhausted, but I wanted to share the happy bit of news.

    Blessings to you and yours.

    Wednesday, October 26, 2011


    It's only Wednesday and the trekking from home to Oakland each day already has me feeling completely whipped. It's now an inextricable truth to me that only by the grace, strength and power of God did I manage to survive sustaining my pregnancy last year while existing according to this kind of schedule. I give all-new meaning to the term 'fried' right now.

    Logan continues to recover from his mastoidectomy nicely. The ENT still has yet to come by to check his incision site and make sure everything is progressing normally (which is the root of no small amount of consternation, believe me), but otherwise we're doing okay. His Voriconazole (new antifungal medication) is now PO, which means 'taken by mouth' rather than intravenously, and we're trying to make sure he can handle the pain with Tylenol/Codeine rather than Morphine, since we can administer the former at home but certainly not the latter.

    I learned today that his CT scan from Sunday showed a small gallstone, which is apparently not uncommon in kids who receive IV nutrition for long stretches, as Logan did. As a result, he started on a medication to break it apart, and the team will monitor its progress via CT. I also discovered that although his cultures haven't yet grown any bacteria, the sample taken from his right maxillary sinus during surgery grew a fungal spore. It's not surprising, since the aspergillus infection is in his right ear and that sinus is very nearby, so no one is terribly concerned. Hopefully, he'll be able to come home by the end of the week.

    He was quiet but in a decent mood while I was visiting this afternoon. He spent most of our time together in the playroom making brightly colored pipe cleaner spiders. By the time I headed out, he'd amassed quite the army of multi-legged (and I say 'multi' and not 'eight' because Logan took a liberal approach to spider limb counting) little friends. He really enjoys coloring and creating things with his hands these days.

    Thank you for continuing to pray for his continued health and sustained healing. He has an MRI scheduled for November 2 to check on the status of his spinal swelling, so please pray over that, if you will, in addition to the usual requests. Blessings to you.

    Tuesday, October 25, 2011

    The Surgery

    I have to apologize; I know a lot of you were awaiting an entry about Logan's surgery yesterday, but by the time he got out of the OR, it was after 9 PM, Adam and I had traded places, and I was, to be on-point, emotionally spent.

    The modified mastoidectomy (modified because they didn't remove the bone, rather cleaned it out) went well. The ENT said there were no complications and the team seemed pleased.

    His release from CHO is dependent on a few items. For one, his pain needs to be well-managed. Right now, morphine is his friend, so he'll need to be able to get by with just Tylenol with Codeine. For another, they're waiting to see if the fluid removed from his maxillary sinuses grows any bacteria. If it doesn't, they'll be able to remove him from the antibiotic he's still taking. (The anti-fungal, however, will continue for some time to come.) There are a few other conditions that also need to be met, but the gist of it is that he could potentially be home by the very end of the week or the beginning of next. Of course our priority rests with doing what's safest for Logan, but it would be awesome if he could be home for Halloween and Abby's birthday.

    Thank you for continuing to pray for Logan's health and sustained healing, and for the rest of our family as well. I confess that I've struggled mightily with anxiety --extreme at times-- over the course of the past days, and request that you pray for peace for me. I really need it.

    Thank you, and many blessings from our home to yours.