The Logan Update: 2/28/11

The past several days have been very challenging for me. Fortunately, Logan has handled them with the same grace and joy with which he's handled almost everything about the past six and a half months, so I'm grateful for that. But I'm tired. Drained.

This morning we had the consult with Dr. Chung, the radiation oncologist at Alta Bates. While I know intellectually that we're doing what we have to do to try to save his life, my heart cried out in protest as she went over the protocol and the long-term effects. It's absolutely crushing to think about radiating my dear, sweet little boy, this child who I carried in my womb and birthed and have loved so dearly for the past several years. It's crushing to think of his beautiful eloquence and intelligence being affected by this horrible, awful decision we've had to make for him. It's crushing to know that he'll lose most of his hearing, that he'll have trouble learning down the road, that his growth could be stunted. I continue to realize that people can be cruel and I'm acutely aware that we're setting him up to be the object of much ridicule later in life.

But at the same time, I also know that our goal here is for him to have a life, and that it wouldn't even be a possibility for him without undergoing radiation. It's times like this that I feel indignant, angry, defiant: How could this be happening to him? How? It's beyond infuriating. It's so grossly unjust that there simply aren't words. But again, we long for him to have a life here, so we do what needs to be done. And I feel a modicum of peace over it all. The past days have been nothing short of torturous for me as I felt my hope wane to the point of despair, but there's something renewing about beginning a new form of treatment. There's the promise of something better around the corner.

So he'll begin craniospinal radiation early Thursday morning. The first few weeks will target his entire spinal column as well as his entire brain, while subsequent weeks will focus on the spots that have hosted known disease, for a total of six weeks of treatment. The doctor prescribed a new course of decadron that he's to take for the next week to try to stave off any swelling that might occur. Given the proximity of one of the tumors to his spinal cord, it's a precaution that we need to take.

As of now, we're toying with the idea of taking the kids to Disneyland this weekend, before the side effects kick in and Logan is too tired and too sick to travel.

Please continue praying for Logan's complete healing and for our family. Please pray that the known spinal tumors -- and any others that have rooted themselves in his little body -- will be kept at bay until radiation begins Thursday. Please pray that the radiation will be outrageously successful and that the doctors will be surprised by its effectiveness. Please pray for peace and wisdom for Adam and myself; we're both drained -- empty beyond empty. And we're scared and worried and struggling to hold on to hope in the face of so much crushingly bad news. Pray for widsom for all of the doctors and for peace and joy for Logan as this next phase of treatment begins and progresses. Please pray that the side effects will be as mild as possible; that the Lord would be merciful to Logan in this way, particularly given how very, very much he's already had to endure. It takes my breath away when I consider how much he's had to take at such a tender age.

Thank you from the bottom of my heart for your support and your prayers. They mean so very much. Blessings to you.

The Heat of Battle

I'm issuing a call to Logan's prayer warrior team: It feels like we're entering the primary meat of the battle. Please pray as fervently as you can.

I don't have a real reason for my suspicion. Maybe it's the fact that I've felt horribly on edge for the past few days. Maybe it's because my hope feels like it's waning. Or maybe it's because a few days ago I deliberately shined a light on the darkness that's afflicting Logan and it's striking back. I don't know. But I feel as if it's the case that we're entering a critical time. So again, please pray. Pray that God will keep His hand on the tumors and keep them from doubling and redoubling. Pray that He will stop the spread of the disease. Pray that He will keep his brain clear of cancerous cells. Pray that we'll be led to make the right decisions with treatment, and that the doctors will have great -- no, exceptional -- wisdom when it comes to additional drugs, dosages and timing. And of course, please continue to pray for total healing for Logan. I still know it's possible, even though things look less than rosy. I believe that God held His hand on the primary mass and kept it stable during the recent two-week delay. I believe that He was Dr. Sun's hands last Tuesday. I also believe that He can hold the spinal tumors in check. I believe that He can crush them into nothingness in spectacular fashion. Please pray for those things. I believe that God does know our hearts and what we want, but I also believe that we aren't ask likely to receive when we fail to ask. So please join us and ask, beg, intercede.

I appreciate each and every one of you for your dedication and support. God bless you a hundred times over.

As for us, we're chugging along, trying to live in and savor each moment. More than once over the past few days, friends have seen Logan and marveled over how incredible it is that he endured neurosurgery just days ago yet looks so good. He has such energy, such drive, such joy. He really is a blessing. He really is a fighter.

My brother Charlie came up from Los Angeles for a quick visit yesterday, and the kids loved seeing him. There were diaper fights, an impromptu 'party' featuring a game of pin the bumper on the car (using clean diapers as blindfolds, naturally) and lots of Mater's Tall Tales video game action courtesy of our rarely-used Wii system. It was a sweet 30 hours, and I loved seeing him and talking into the wee hours of the morning. I don't see family often, so I treasure the time we have together.

Tomorrow morning brings with it the radiation consultation and CT at Alta Bates. Please pray that we'll know the questions to ask, and that God will guide the radiation oncologist, who we haven't yet met. Pray for peace for us, especially Logan, who is nervous about what's to come. He deserves to be worry-free. He's such a darling, really. If there were a way I could bottle up his personality and mail some to each of you so you could experience his joyful, uplifting, bubbly essence for yourself, I'd do it in a heartbeat. But I can't, so you'll have to take my admittedly biased word for it.

My sincerest thanks to you once again for your support. Blessing as we enter a new week and a new phase in Logan's battle.

Urgency

My heart is heavy, but I continue to hold on to hope. And it's not a function of me desperately grabbing onto something to keep myself afloat during this horrific time. No, it's me proclaiming Christ and affirming that God has the power to heal no matter how dire the circumstance, no matter how hopeless the situation may seem to human eyes. He merely has to choose to do it. Oh, to know the heart of God and to understand why this is happening to my sunshine would be such a sweet relief. But it's not mine to know, so I must hold onto faith and move forward. I have no reason to not trust, after all: He brought Logan safely through surgery on Tuesday, guided Dr. Sun's hands through the task of removing the mass in very successful fashion, and brought Logan home to us this afternoon, a mere three days after his operation. Since we're now more or less in Miracle Alley, as I call it -- a place where little short of a miracle will make Logan well -- I pray with every fiber of my being that He will choose to use the upcoming treatments to heal my son once and for all, just as he used the surgery Tuesday to bring healing to his brain.

I'm back again this evening to express my heartfelt thanks to our preschool. Ms. Kelly, the director, came by this evening with two huge bins filled with gifts for our kids and our family. Watching them sit there on the living room floor enthusiastically tearing through the bounty of generosity brought tears to my eyes for the upteenth time today. As awful as this journey is, we've been so blessed by the kindness of friends, family, even complete strangers. So a deep, sincere thank you to everyone from SLP who worked to brighten my family's day today.

I also felt pressed to return and write more because I wanted to be more specific with our prayer requests. Please pray, as I requested that you pray for the primary brain mass, that God would press his finger against the tumors in his spine and prevent them from growing -- and prevent new ones from forming -- in the days to come. The prayers worked the first time, since the primary mass remained stable between MRIs; please offer them up again. If they do grow larger, he could begin to experience weakness in his legs, and could even lose bladder control and the ability to walk. Please pray against those things. Pray the bold prayer that God will not only put a finger on the tumors, but that He would crush them into nothingness, that He would eradicate the cancerous cells from his precious little body. Pray it, visualize it. Pray also that his brain will remain clear of cancer; the radiation will focus first on his spinal column, since that's the current problem area, and it worries me to think of his brain being attacked once again while it's not undergoing direct treatment. Pray that the radiation would be completely successful and the side effects surprisingly minimal. And pray for wisdom for the doctors and for Adam and myself. In addition to radiation, Philippa called this afternoon and said that Dr. T. wanted to start him on two new chemo drugs as well to try to combat the spinal tumors; please pray that those drugs would be extraordinarily, mind-blowingly effective.

But more than anything, please just pray. Please petition God to restore my baby's health and well-being. I want him to grow up, to have a life here. He's an amazing person. He deserves so much better than this scourge that's invaded his body. He deserves more than a sad story attached to his name. Please ask God to heal him.

I can't really convey the depth of my emotions or how urgently I'm pleading with each and every one of you to pray as much as you can, as often as you can. How desperate I am for more prayer warriors to join Logan's team to lift him up. If each of you asked just one more person to join in, the wave of prayer would grow exponentially. Just imagine, for a moment, that it's your son, grandson, nephew. Your best friend's child. Pray as if Logan were one of those people, and beg God to heal him. I believe in the power of prayer. I believe in miracles. And I believe that there's a powerful story of redemption waiting to be written here. Thank you.

Heartbreak

It's been a day of great highs and one tremendous, gut-busting, heart rending low.

It began this morning when a diaper-clad 10-week old baby Brady laughed for the very first time. An infant's laugh is a lyrical, musical, joyous sound and I lapped it up with the enthusiasm of a little bird sipping nectar from a bloom. It continued with the news that Logan would be released from CHO this afternoon. He looked great when I arrived; just about everyone who came into contact with my little man remarked on how good he looked, on how you would never, ever guess that just three days ago, he underwent ten hours of neurosurgery. Those were both sweet, praiseworthy scenes from our day.

And then I was reminded, once again, that we're enmeshed in a spiritual battle of the ugliest sort.

While we awaited his release -- me with Logan in the PICU, and Adam with Brady and Isaac outside in the play area -- Philippa arranged for Adam and I to meet with Dr. T., which I knew was not a good sign. After all, there was no real need to meet with him given that the plan was in place and the pre-transplant cycle appointments had all been scheduled for next week and the week after.

And I was right. My stomach absolutely turned as he delivered the latest dose of toxic, painful news: Wednesday's post-op MRI showed that Dr. Sun had indeed done an excellent job with the tumors in his brain, leaving very, very little questionable material behind. However, the tumors in his spine grew tremendously since the prior MRI (roughly three weeks ago), going from a few millimeters in diameter to nearly a centimeter. And because that news wasn't terrible enough, he also informed us that there are additional tumors as well, located higher up in his spinal column. One in particular is perilously close to impinging on his spinal cord, which could result in permanent damage.

As a result, the treatment plan changed once again. He goes to Alta Bates on Monday for a CT and consultation, and then he'll begin his six weeks of now-extremely intensive radiation in the middle of the week. Dr. T. had been hopeful that the spinal tumors would stay small -- and for all intents and purposes, they SHOULD have, given how decimated the brain tumor itself was upon extrication -- negating the need for high-dose treatment, but his hopes (and ours, of course) were dashed. He'll begin with radiation of the spine to try to keep those tumors under control and to attempt to keep new ones from growing. He'll probably lose most of his hearing, his growth will be stunted, and he'll face likely-significant learning problems over time.

This evil, bastard cancer is decimating my sweetheart. But even knowing the challenges he'd face, I still believe that he would lead a happy, fulfilled life, and that he'd go on to profoundly affect others with his sunny disposition and outlook. And with one heck of a story of triumph and survival.

My initial thought when Dr. T. told us about the developments was 'Oh, God, you're in control here. Please take over and do something.' Then I thought 'darn it, I just knew that Tuesday's joy would be short-lived.' I know that I sound like a wing nut to some of you and that's okay, but I reiterate what I've said before: This is a battle. A big, ugly, aggressive, terrible, painful, rotten battle between good and evil.

And now I'm pissed off. I'm sad, of course, but my primary emotion is anger. Not with God, though I believe fervently that all it would take to heal my son is a simple thought by the Father and my simple mind can't comprehend why He won't act in a grand, visible way to grant healing once and for all. Not with the medical team, though they were responsible for missing the spots on the MRI back in December, and we're now six weeks behind where we could have been. Nope. I'm angry with evil itself, the father of cancer, disease, pestilence and pain.

So I'm calling evil out right now: I know what you're doing here. I know that you're trying to destroy my baby. But I also know that GOD is bigger than YOU. And though the mountains may shake and my heart may break, I will hold onto the truth that God wants bigger things for my son, that God has a future for him here on this earth, that he will be well again down the line.

It's tempting to throw in the towel, I admit. It's a painful path we've traveled thus far, and I know there's more pain in store for all of us. It would be easy to give up given how much he's endured. And when I asked Dr. T. and Philippa to be frank with us, both looked at us with pity eyes; Dr. T. said that he wouldn't lie, and that things weren't looking good. Philippa said, when I asked if we should start talking to Abby about what could happen, that we should probably begin to prepare her.

But Logan wasn't created to quit. He's sailed through five rounds of brutal chemo. He's gone through three brain surgeries and come out of each more easily and with more strength than the previous. He's been 5 seconds from bleeding to death. He's had blood infections, been on oxygen, had a heartrate of over 200 for days on end, undergone more scans than I can even count, and has been the recipient of unit upon unit of blood and platelets. But God made Logan astoundingly resilient and strong. He made my son a fighter in the purest sense of the word, and fight he will.

But still the worries lurk in my heart. We had a little talk about Heaven this morning. I told him that in Heaven, there are no owies, no pain, no hospitals. And then I asked him if he wanted to be here or there. And I held my breath, because children can so often shock us with their wisdom and prescience. I was relieved when he responded "I want to be here". So I told him to ask Jesus to make him all better, and he said he would. And I hope he does. And that He does.

I ask all of you with a renewed sense of vigor to cry out on Logan's behalf. To be louder, more plaintive, more dedicated. I know I ask that of you all the time, and I appreciate all you've done for our family. But this is an intense, difficult battle, and Logan desperately needs your prayers.

I feel like I should address one more topic before I close. I realize that every family facing a cancer diagnosis and grim prognosis feels that *their* child is *the* child who should survive; that he or she should be the one who receives the brush of God's hand against the cheek. It's impossible to hope for anything less. Hope needs to live in order for the heart, the soul to survive an ordeal of this magnitude. But just look at Logan's story thus far. Look at the succession of ups and downs, highs and lows, victories and setbacks. See the hand of God moving, and the forces of evil striking back with vigor. It's been a heavily rutted path, and if we have hope of beating this thing, I need to call out the evil behind it, shine a light -- THE light -- on it, and ask all of you to pray, pray and pray some more for God to perform a miracle here. As a Steven Curtis Chapman song says,

Let us pray, let us pray, everywhere in every way
Every moment of the day, it is the right time.
For the Father above, He is listening with love,
And he wants to answer us, so let us pray

I have to know that God is hearing Logan's army. I know, of course, on an intellectual level that He is. He hears every unspoken thought. But I believe in the power of intercession and in the power of a tidal wave of prayer.

Thank you for your continued support and have a blessed weekend.

Hurt Feelings

I'm sensitive. I try to hide it with humor much of the time because I never want anyone to know precisely how sensitive I am, but it's extraordinarily easy to hurt my feelings. And naturally, no one is better at doing it than the people I care about most.

I had a very frustrating afternoon. I gathered the items Logan had requested I bring -- fruit snacks (three different kinds, in case he was feeling finicky), a new Cars diecast vehicle and two books about cars -- and then headed to CHO for a three-hour stint. And what happened? He spent nearly two hours crying that he missed daddy and wanted daddy and wanted me to go away so daddy could come back. (Forty-five minutes were spent sleeping, and the other fifteen involved a game of Candyland and half a game of Boggle.) He yelled so loudly that I could feel the eyes looking at me and silently judging me for not being as desired as Adam. I was so ashamed and embarrassed, and wished I'd been a better mom so that he'd want me there as much as he wanted his dad.

It absolutely breaks my heart. It's almost more than I can take. After all, I'm the one who keeps track of his Cars collection, knows which ones he's missing, and buys the new ones. I'm the one who carried him, birthed him, mothered him, stayed home with him almost every day of his life up until his diagnosis changed everything. And now, he doesn't want me anymore. He just wants his daddy.

It's awful, really. Not only do I feel rejected, but I'm jealous of Adam. Since I was pregnant, I wasn't able to spend the nights at CHO with him, so Adam took my place as numero uno in his little heart. I resent being booted and it just makes me... sad. And of course, I feel silly and sad for being jealous.

It's horrible to feel so unwanted.

But anyway, this is all terribly self-indulgent of me. My apologies.

Logan is doing fine with recovery. There are orders in place to move him to the oncology wing, but it's full right now. Over full, actually, so I'm not sure if he'll get a bed or not. It's a shame, because he hates the ICU and being there has a terrible effect on his emotional state.

Please pray that a room elsewhere will open up for him so he can get away from the ICU. Pray also that Brady will sleep well tonight and tomorrow night. He's had two nights in a row of awful rest, which means I've gotten little sleep myself. And when I don't sleep, it wears one me. I'm less patient, less kind, less loving. Less of the person I should be. And of course and as always, please continue the prayers for healing.

Thank you and good night.

The Day After

One of the most exhausting parts of Logan's illness is the sheer volume of patience it requires to cope with his volatile behavior following procedures. I am not a naturally patient person, so God is definitely stretching me like a rubber band. My hope is that I won't eventually snap.

When I arrived for my shift this morning, he was still undergoing his post-op MRI. He awoke from the anesthesia suddenly and quickly in the recovery room, and a storm commenced: He wanted daddy, he didn't want me. There's nothing new about that. It's been a commonplace occurrence over the course of his treatment. I accept that. The rejection cuts like a knife to my heart at times, but I understand. He tried to slap me away and screamed and cried for Adam. Only the promise of a juice box paired with three shots of morphine settled him enough to allow us to return to his spot in the PICU.

Once there, confusion and chaos ensued as his old nurse tried to fill his new nurse in on the relevant details. I felt completely helpless as I stood there listening to him scream and cry for food and drink while the nurses fiddled with his many, many tubes, trying to re-enable all of them as quickly as possible. I'm his mother. I knew that if he could just have a drink he'd go silent. But somehow, I couldn't manage to communicate that to the nurses. There were worries about him throwing up, uncertainty over what the neuro team wanted. And no one was in a hurry to figure it out. So I had to listen to him cry and watch him suffer as he writhed in thirst and his little tummy spasmed with hunger pangs. And it was horrible. Fortunately, the lines were established correctly, the proper questions were asked, and he got his miniature box of apple juice. As I'd predicted all along, he sucked it down in 30 seconds flat, asked for another, drank it, and settled into a quiet, peaceful state.

It's emotionally exhausting to feel pushed to one's limit, frustrated, hurt and heartbroken all at once. It crushes me to see him in such discomfort, to see him so very unhappy. At the same time, it's frustrating to hear him yelling the same complaints ad nauseum. I'm still human, so I still feel prickles of irritation, despite being cognizant of the great suffering he's had to endure. It's harder still when I don't feel like he's getting the care he deserves. I've not been truly angry often during the past six months because in general, the care Logan has received at CHO has been very good. But today's experience, the 15 minutes when Logan's comfort didn't seem to matter to anyone who could do something to help him, was horrid.

But I guess that's just part of our reality right now.

I'm sure this sounds substantially more negative than had been my intent. I'm tired; Brady decided that sleep was for suckers last night, so the needle on my tank isn't just empty right now, but below empty. The reality is that my sunshine is doing quite well. Yes, he was cranky, but praise God that he was alert and aware enough to be angry over being in the hospital. There were points in time during this journey that saw him desiring time at the hospital because he knew that it was the best place for him to be; because he knew that Adam and I simply couldn't make his owies better at home. He's off oxygen and he looks good, considering that he's fresh out of neurosurgery. He's mad over his foley catheter and wants to stand to use the restroom. He's truly a picture of resilience, and we're so unspeakably grateful for that quality that God has given him. I wish he didn't need such strength of character; after all, he's still a 4-year old little boy. But obviously it's good that it's part of who he is.

As always, there are so many more things I want to say. So many thoughts I want to share, so many feelings I want to try to express. But what I need is rest, so off I go. Blessings to you, and thank you for your continued prayers as we continue fighting this battle.

The Surgery

I've been thinking about this entry for hours now, hatching a clever sentence here, a deliberately touching phrase there. But now that I'm in the moment and the day is through, I have only one big thing to say:

Glory to God in the highest!

Dr. Sun joined us in the cafeteria at about 7:30 PM Pacific, almost 12 hours after we'd met to gloss over the procedure one more time. He pulled up a chair, sat down and shared the news we'd been awaiting all day long:

I got everything I could see. I think I got it all.

My heart absolutely leapt in my chest. Got it all?! I had to quell the urge to jump up and hug him. After the trials, the disappointments, the fears, the frustrations, the seemingly endless string of 'one step forward, two steps back' setbacks and the hopelessness that dominated the past six months, it was incredible to hear those words at long last.

I hoped all along that he would be able to remove every speck of cancer from Logan's brain, but I don't think I ever believed that it would actually come to pass. It's not so much the result of a lack of faith, rather a desperate need to protect myself from yet another blow; from yet another punishing kick to my gut. To actually hear those words, to know that my prayers were answered in such an enormous way is absolutely amazing.

What makes it all the more amazing is the fact that I got the sense all along that I wasn't alone in expecting that he wouldn't be able to remove the entire tumor. I don't think Dr. T thought it would happen. I know Adam didn't think it would, though like me, he hoped and prayed that it would. To have a prayer of that magnitude answered in such a spectacular way is just mind-blowingly awesome. Many, many praises to God. Lift 'em up, friends.

In terms of the brass tacks, here's a little more detail. Dr. Sun said that it was likely that the MRI he'll have in a few days would still show residual 'stuff', but that he was confident that it was scar tissue rather than cancer material. Adam asked about the tissue that had been removed, and he shared that the quick freeze pathology showed primarily dead or dying cells, mixed with a small number of AT/RT cells. In other words, the tumor was still in the process of dying off when it was removed. Remember the Methotrexate that refused to leave Logan's system? It had a purpose, folks. It gives me chills thinking about it now.

Although this is indeed encouraging news, I'm still mindful of the fact that we're not yet out of the woods. In fact, we still have a long road in front of us to navigate. There are still small tumors in his spinal column, so he's not going to enter the transplant cycle completely disease-free. And post-transplant, he still has six weeks of radiation ahead. And then he'll need to be in remission for two years before he'll be considered completely clear. So please: Keep praying. Keep recruiting friends. Share the story and use it as a testament of what God can do! No one really thought that the entire tumor would come out today, but it did because God cradled Dr. Sun's hands in His own and made it happen. I believe that.

By the time that we finally got to see him post-recovery in the PICU, it was already after 9 PM. When I left, he was awake and clearly uncomfortable, but communicative and very frustrated that he wasn't allowed to get up to use the restroom. All positive signs, even if it is hard to see my sunshine in pain.

Before I head to bed for the evening, I wanted to share a little anecdote. I was anxious much of the day. There was an underlying layer of fear lurking beneath my generally cool demeanor, and I struggled, at times, to deal with the weight of the situation; with the weight of knowing that my little boy was in an sterile operating room, lying on his tummy as a surgeon picked away at his delicate brain tissue. And then rather suddenly, I heard it: Something amazing is coming, Sherry. I'm at work. Are you watching? And then I felt a measure of peace envelope my troubled soul and the worry was replaced with a vaguely nervous anticipation. And then, for the first time, I realized the date: 2/22/11. Not my magical birthday that didn't work out -- 1/11/11, but its double. 1/11 may have been lousy, but 2/22 exceeded my expectations. Dorky observation, yes, but I guess you could say that I try to find the gift in every situation these days.

2/22 is my niece Brianna's birthday, but it's now something of a re-birthday for Logan as well. It's the day that this modern-day David took his first giant step toward defeating Golliath. I hope that we'll be celebrating it as a very special and important day long into the future.

Good night, and thank you so much for lifting us up today. Please keep praying; it works. Blessings.