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.

Monday, February 28, 2011

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.

Sunday, February 27, 2011

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.

Friday, February 25, 2011

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.

Thursday, February 24, 2011

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.

Wednesday, February 23, 2011

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.

Tuesday, February 22, 2011

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.

Today

It's surgery day and I've been trying to keep a low, quiet sort of profile to keep myself calm. I'm sorry for not posting at all until now, though.

Logan has been in surgery since roughly 9 AM Pacific. Dr. Sun estimated it would be 6 to 10 hours, but the reality is that it could wind up taking even longer than that. We've received update calls roughly every 2 to 2.5 hours and all has been fine thus far.

I'll be back later when I have something new to update, but I thank you for your continued prayers. I feel them.

Sunday, February 20, 2011

The Logan Update: 2/20/11

In less than 36 hours, Logan will return to CHO for the second attempt at his second resection. Neurosurgery. It's not something simple like a compound femur fracture or a busted lip. It's brain surgery; brain surgery on my darling, sweet, wonderful, spritely four and a half year old son who is obssesed with Cars, adores his big sister, finds tremendous delight in opening mystery eggs while playing Farmville and wows everyone he knows with his sunny disposition and incredible vocabulary. A surgeon will cut his head open, navigate through delicate and essential tissue, and carefully pick out chunks of material that should never have been there in the first place.

Even as I type, my heart cries out in protest. This kind of thing should never be necessary. Children, the little lambs of God, shouldn't be subjected to this kind of horror. But they are. And that's a hard truth to swallow. I'm sure that it's hard for you, my friends, to read about, but believe me when I tell you that it's innumerably harder for me to write it and to own it. I can't take a break from reading my blog when it gets too emotionally difficult to handle. No, this is my reality.

It still stuns me when I wake up in the morning and realize that this is my life. My once near-perfect, quiet existence has devolved into, for lack of an eloquent expression, a complete and utter mess.

I wish that I could say that I feel a satisfying, comforting sense of peace over everything that's happened and all that's to come, but I'd be lying. I feel worry, fear, anxiety, anticipation. At the same time, though, I feel a tinge of excitement, purely because it's exciting to feel like we'll at long last be taking another big step toward beating this beast once and for all. Of course, I wrote similar words a few weeks ago before the near bleed out in the OR, but they're no less true now than they were then. The fact of the matter is that in order for Logan to have a shot at kicking this cancer to the curb for good, the mass has to come out. Period. So onward we go.

It's been a pleasant weekend. The plan changed a little when Dr. Sun's nurse, Sue, called yesterday to say that the MRI would be today at 10 AM. Adam took Logan in while I stayed home with the other kids. When they returned, we all piled into the van and headed to McDonalds for late lunch. On the way, Adam remarked that the radiologist who had performed the scan said that the mass appeared to be stable since the last MRI, and I breathed a huge sigh of relief. It's true that we've been the victim of mis-read scans before along this journey, but I won't let the memories crowd out the pleasure of those words. I'll simply thank God that the mass still looks relatively similar to how it looked weeks ago and call it a day.

Lunch was surreal, in a way; or as surreal as a meal at a fast food joint can ever be. We crowded into a big booth with a rounded bench and munched away. As I looked into the faces of each of my children, I felt a distinct sense of sadness over the uncertainty that plagues my family. It's painful to internalize how much they all love each other; how much they live for each other and how inextricably entwined their little lives truly are. They're the best of friends (and at times, the worst of enemies, but alas, that's the scourge of siblinghood, I think) and each has shaped so much of the others' personalities that together they create a perfect, priceless piece of artwork, one that's splashed with more colors than a simple spectrum could ever reflect. They may not represent perfect love, but they certainly represent deep, true love. And despite our less than ideal circumstances, we're blessed to see it displayed through all of them.

Heading into Tuesday, I can't help but feel like we need your prayers more than ever. It's a crucial day headlined by a crucial event. Please pray for Dr. Sun's hands to be God's hands as he works, and for great wisdom for him and his team. Also, pray for peace and strength for Adam and I as we wait. And as always, please pray for complete healing for Logan. I know that all it would take is a simple thought from God to make him well once again, and I pray for that with everything in me, with every ounce of energy I can muster, with every tear that falls.

Thank you, and have a blessed Monday.

Friday, February 18, 2011

Scheduling Update

It's late and I'm heading to bed shortly, but I wanted to pass something on before I did so: Logan's surgery has been moved up to Tuesday morning (the 22nd). We'll go in early, he'll have the stealth MRI that involves placement of the fiducials (aka to us as 'the donuts'), and then he'll go from there to the OR. So please keep that date in prayer; prayers for the surgery team, the hospital staff, our family, and especially Logan. Thank you all, and happy weekending.

Thursday, February 17, 2011

A Shift in Perspective

A funny thing happened about 48 hours ago. Shortly after I confessed my weakness, my worries began to melt away. I'd been waking several times each night, my heart and mind hard-pressed and heavy with worry, but not last night; only Brady was responsible for my wakings. Of course I'm still concerned about Logan's future, but somehow, the burden of the past six-plus months and of the months of treatment still to come seem markedly lighter. Coincidence? No way. I don't believe in coincidences. So many thanks to all of you for helping to lift me up.

I have energy again. I have a spring in my step (though that could be because I'm freezing and need that springiness to keep my core warm -- my East Coast roots are ashamed of me, but I'm a complete pansy when it comes to cooler temperatures these days). My wry sense of humor is back. I feel more optimistic, more hopeful, more in-line with how I'd been feeling for the majority of the past several months. Though I'm still irritated with Him, I must give thanks to God for the renewed strength -- mental and physical -- that has served to rejuvenate me and my outlook.

We've had a pleasant couple of days here at home. I remarked to Adam this evening that I think Logan is actually doing better now than he was before he went in for the failed surgery attempt last week. He has more energy (if that's possible) and is definitely eating and drinking more. He's having fun; he's acting like a normal 4-year old boy leading a normal life, save the helmet on his head and a slightly crossed right eye. He and Abby and Isaac enjoyed an energetic diaper fight this afternoon followed by more of the same post-dinner this evening. (Lest you should wonder, a 'diaper fight' involves each participant arming him or herself with an handful of unused (I do still have some sense in my tired little head) diapers and then launching said bottom covers at one another. Much laughing, running, shrieking and ducking is also in play.) I started to get annoyed with the volume and the chaos of it all, but I stopped myself because there was something so utterly ridiculous and fabulous about the scene that I just wanted to sit and -- ironically -- listen to them at play.

There's value in living in the moment. It's something I'm learning just now at 33, after rushing through much of my life engaged in a frenetic race against no one but myself. I was often so desperate to reach each checkpoint, each glorified goal, that I failed to notice the flowers that dot the side of the road. But not anymore. My noisy, crazy, wacky kids coupled with this entire horrible ordeal are teaching me to live differently; to live better, more effectively. More fully. I'm going to watch the sun rise over the ocean when the opportunity presents itself. I'm going to take the long, meandering surface streets home instead of the freeway sometimes. I'm going to move slowly and deliberately. I'm going to watch my tongue and strive to speak sweeter words when the opportunities arise or when they're needed by a challenged soul. I can't emerge from all of this unchanged, after all.

Please keep praying for Logan and his complete healing. I still believe that total wellness is possible for my sunshine. Please also pray for the surgical team next Wednesday as we go back for a second go at the mass. Please pray for wisdom and sure hands for Dr. Sun, and for successful and safe removal of as much of the tumor as possible. Moreso, pray that God will keep His finger on the masses and keep them from growing between now and then (and post-op as well). Finally, pray for our family time over the days leading up to surgery-day. We're in a sort of 'rest' phase at the moment and I want to really enjoy our time together before we get back into a hospital routine with surgery followed by the transplant cycle.

Thank you so much reading along and for praying for our family. Blessings to you.

Tuesday, February 15, 2011

Weakness and Strength

I came to a realization this evening as I spoke with a fellow mom during Abby's dance class. It's a pretty obvious one, but it seemed profound at the time. I was filling her in on the most recent mega-drama from Logan's journey and sharing my feelings with substantially more candor than I can usually muster during face-to-face conversations. As tears stung my eyes, she looked at me and said that she didn't know how I'd managed to not be 'like this' earlier on in the process. By 'like this', she meant vulerable, uncertain, fearful, outwardly worried and stressed over the virtual mess that's been my life for half a year now. (And it has indeed been half a year; today marked exactly six months since Logan's eye turned inward during that mundane-turned-fateful Sunday dinner.)

Anyhow, the realization?

I can't continue to be strong -- or hope to be in the future, for that matter -- if I don't first admit that I'm weak.

So it's out there: I'm weak. I'm really, really weak. I doubt God's intentions here, I doubt His goodness, I doubt my own ability to handle the coming months and the stress. Just call me Thomas(ina). I would say that those are bad things, but the other strange reality is that I don't think they are all that terrible. If I feel badly, I need to be honest about it so my praying friends can lift me up.

Now none of this is to say that I haven't been truthful about my feelings and my mood in the past, because I most certainly have. It's merely a confession that lately, it's been harder to cope with the weight of the path we're on.

So that's that.

Logan has been doing well at home these past few days. He's been eating reasonably well; this evening he actually finished his entire dinner plate (of his requested meal -- spaghetti and meatballs) and then requested an additional meatball. So I'm grateful for that improvement. He's also had plenty of energy, and managed to balance it out with an appropriate amount of restraint, which I'm certain is a challenge for a spirited 4-year old little boy.

One of his chemo port lumens was clogged when Adam tried to draw blood this morning, so we took him to CHO for de-clogging and spoke with Dr. T. while we were there. He confirmed the plan moving forward -- surgery, a single transplant cycle, radiation -- and expressed his regret that they'd missed the tiny spots on his spine that, in hindsight, were actually present on the December MRI. Had they been spotted, we would've skipped cycle 5 and gone straight to surgery, with the intent of getting through transplant and on to radiation as quickly as possible. He also noted that fortunately, the extra cycle hadn't resulted in negative progress with respect to the appearance of the tumors, but it's still disappointing to feel so far behind where we 'should' (though I use the term very loosely) be right now. But we can't go back, so there's no point in dwelling on what I can't change.

He also mentioned that the surgery will likely be scheduled for next Wednesday, the 23rd; Dr. Sun is still in the process of shuffling some previously-scheduled procedures to different dates in order to fit Logan in that day. So please hold up that date in prayer -- for Dr. Sun, for the OR nurses and other staff, for us as we await news.

As the conversation came to a close, I lamented with a wry smile that nothing about the treatment process had been easy or textbook so far, and that it would potentially make one heck of a book one day. Then Dr. T. said something that cut straight to my heart:

When you're dancing at his wedding, you'll look back at all of this and have quite a story to tell about what it took to get there.

I've never hidden my feelings about dancing with my sunshine here, but I rarely mention them when I'm out and about in real life. For him to use that particular line was just so special to me; almost like a gift from God.

That's it for now. I'm weak, I'm tired, I'm forgetful. I thank you for your prayers, even as I have trouble offering them up myself, and thank you also for recruiting additional prayer warriors to join our team. Enjoy your evening.

Sunday, February 13, 2011

Sunday Night

I'd intended to update last night, but my body had other plans. I laid down on my bed with Brady, who'd been crying hysterically, with the intention of nursing him to sleep at about 7:30. And I did. But I put myself to sleep, too. As a testament to how utterly wiped out I've been of late, I woke up at 6:45 this morning (after lots of overnight feedings, of course) and was still tired, almost as if I'd taken a sedative.

But that was hours and hours ago.

So the update on Mr. Logan. Dr. Sun popped by our spot in the PICU about an hour after I'd arrived for my shift yesterday (Saturday). He asked how Logan was doing, and when I said 'fine, but mad about being here', he said 'okay then, I'll send him home'. And so it was done: Monday turned into Saturday, and he was out by 5 PM. It was stunning, because we'd never before been discharged on a weekend and figured that it never happened. Dr. Sun reiterated that he felt it was important that Logan have a week at home to recover mentally and enjoy some normalcy before returning for a second go at the tumor. Much to Logan's complete consternation, he sent us home with a soft helmet that he has to wear for the great majority of each day; it's intended to protect the soft spot on his head from damage. He was not a single bit amused, but wore it today without complaint. (That in and of itself probably qualifies as a miracle.) I tricked it out with some 'racing stripes' (also known as medical tape in various colors provided by Ramona, a PICU nurse). I think perhaps that made the indignity more tolerable.

So that's where we are for now. We lunched at Fresh Choice at the mall this afternoon, and Adam took the kids for a stroll while I secured Valentine's Day cards and some candy for Abby, Logan and Isaac. I was completely dismayed to realize that I'd inadvertently forgotten about Brady, but excused the gaffe with the well, he falls under the 'less than two months old so it's not that awful that I forgot about his existence' category free pass. (And it's a good thing that today was the 13th, since he'll turn two months tomorrow.) Anyway, said oops sent me to Walmart later on, and Logan opted to accompany me. And I was reminded for the upteenth time that he's a wonderful, sweet little boy as he insisted on picking out 'birthday presents' for everyone in our family. And I spent much of my time pushing him in the shopping cart silently praying for his healing and the eventual redemption of this entire experience. I do that a lot these days.

Please keep praying for good things. I'm sure that it's selfish to insist on wanting him completely healed, but I continue to believe that he has so much to offer this world later in life. So, so much. Thanks and blessings to you all.

Friday, February 11, 2011

Friday

Hopelessness is a strange bird: It's utterly draining -- physically, emotionally, mentally. So I suppose it's no great wonder that I'm so tired tonight. But after a few bad days, I'm trying to pull up my own bootstraps and emerge from the fog. Not because I don't 'deserve' to wallow a little; I maintain that I do. But because I discovered months and months ago that it doesn't help me at all to be angry and feel sorry for myself. I just forget and re-discover that revelation. Repeatedly.

This morning, I took Isaac and Brady by the preschool to drop off some Valentines for Logan's 'classmates'. I've mentioned it before, but he's been a 'silent' member of the class this school year, though he hasn't -- and won't -- attend a single day. We visited a little with Ms. Kelly, the director. And I have to thank her for helping me to take the first step out of my self-pity pit. She got out of her car, wandered over to mine, smiles like she often does, and said 'you're up! You're out! Despite all of the stuff going on, you're still up and out'. I responded with my usual, garden variety 'well, I don't have much of a choice', but you know what? I appreciated the remark. A lot. I felt validated. And every now and then, I need to feel validated. I need to hear a genuine 'hey, you look like you're doing well' that's not accompanied by pity eyes. Even if I'm absolutely dying on the inside, it's good to know that I don't look it on the outside every second of every day.

Afterward, we headed up to CHO so Adam and I could swap places. And it was a challenging couple of hours. Logan was cranky, sad, whiny. It grieved my heart to see him so upset; to hear him saying -- repeatedly -- that he didn't understand why he had to be there, that he wanted to go home, that he missed his sister and brothers and daddy. He's set to move out of the PICU and into a room on the 5th floor. As of this evening, they were simply waiting for a bed to become available. Prayerfully, that will happen SOON. He doesn't care one bit for the PICU, and I can't really blame him. Very nice staff, but a very noisy, hustly-bustly sort of place, no windows, no privacy.

The neuro team was to round at noon, so when they hadn't shown by one, I had the nurse, David, call to find out their plans. He told me it would be a few more hours as an emergency had arisen and Dr. Sun was in the OR, but not 5 minutes later, Philippa and Traci (Dr. Sun's PA) appeared. We had a good conversation which left me feeling better about everything, though I'm not competely without worry. After all, it's been a rocky, rutted path of late. I let them know that I was unhappy that we hadn't harvested enough stem cells after I'd hounded them about doing so after every single chemo cycle. I also shared my worries over delays.

The plan is for Logan to be discharged from CHO on Monday. He'll then return the following Monday for another MRI, and then a second attempt at the surgery. Dr. Sun will operate via the original incision site, since he still doesn't really understand what happened Tuesday with the new location and doesn't want to risk lightning striking twice. Since I can mis-hear things and tend to be melodramatic at times (shocking, I know), I confirmed with Traci that he'd never had that happen during surgery before, and she verified. I still think that's insane. And I think it was an attack. A flagrant, ugly attack. She also said that he was upset about it; of course he was. I felt badly for him when we found out what happened, and prayed that it wouldn't affect his confidence in the future. I told them that we still have full confidence in him, and they were pleased to hear it.

He's going to be discharged not because he needs a lot of extra time to heal physically, but mentally. Dr. Sun wants Logan to be feeling good on an emotional level as well as a physical one. Of course, it'll also help to have any and all swelling gone, but he needs to go back to CHO with a positive mindset. I confirmed with Traci and Philippa that seven extra days won't make a difference with respect to the tumor.

Post-surgery, which prayerfully will go well and be extremely, extraordinarily successful (get on the game big-time, warrior friends), we'll move on to transplant. I still don't know if we're doing one or two cycles; at this moment, we don't have enough stem cells to do two, but if Dr. Finlay from LA thinks two would be the best course of action, we'll likely go with a stem cell harvest the traditional way: 50 needle pricks in the lower back. It kills me to think of him having to endure that, since my understanding is that it's terribly painful, but Philippa assured me that he could be anesthetized. Sigh. My poor little guy. I've shyed away from agreeing whenever someone has said 'it's just too much!', but I'm beginning to agree: Logan is too good for all of this. Much too sweet, much too good. I'd be furious, if being furious wasn't so completely exhausting. And without point.

So that's where we are: About two weeks behind schedule. It's a scary place to be. Though I'm still smarting over the blows we've been dealt over the past weeks, I still ask that you all pray, and pray aggressively, for Logan's complete healing. I know that you are, and I thank you. Just please keep doing it. I'm sure that your prayers helped to keep him safe -- and truthfully, to save his life -- in the OR on Tuesday. So I also know that they can help keep the tumors stable for an extra 10 days as we await the second operation. Please pray over his upcoming time at home and the surgery that will follow on either the 21st or 22nd. Pray that God will guide Dr. Sun's hands -- as He no doubt did on Tuesday when he was able to stop the bleed quickly -- and that he'll be able to get the entire primary mass. It's hard to ask for big things because I'm terrified of yet more disappointment, but I also believe that you can't really receive what you don't ask for. So there it is.

Thank you for following along, sharing with friends and family, and praying for us. Have an excellent weekend.

Thursday, February 10, 2011

No Title

I don't feel like being witty tonight. I don't feel like doing much of anything but sleep. I know, from previous experience, that I'm standing on an emotional precipice. I slogged through today, tired from Brady's antics last night, from dealing with my fractured family, from trekking to CHO to sit with Logan for two hours, only to have him tell me repeatedly that he didn't want me -- just daddy, from second-guessing myself and everything I've ever believed about God, faith and the purpose of this life. I know: Pretty weighty material. I could just internalize it all and pretend that I'm fine, but I'm not a particularly good liar anyway. I wear my heart on my sleeve. So I may as well be truthful as I write.

To call all of this 'hard' or 'difficult' or 'challenging' is a massive understatement. It's torturous. It's shattering. It's destructive in ways that I can't even begin to try to express.

Although I'm relieved that Logan didn't bleed out in the ER Tuesday, I'm angry. I'm angry that 'hey, at least he didn't bleed to death' has to qualify as a positive thing in my life. Of course it's a good thing; it's a wonderful thing. But it's sad that bleeding out was ever even an option, that it was ever something that could happen.

I'm really just sad. Very, very sad. I feel like the past week has sucked out every nugget of hope I'd held in my heart. I truly feel hopeless; like it doesn't matter that I've prayed for Logan to be healed every moment of every day for the past 6 months. It feels like I'm just going to lose him and there's nothing I can do about it. I know that when faced with pressure like that, I should just push back harder against my fears and pray more, but friends of mine, I'm so tired. So emotionally spent. I feel so defeated and beaten and drained and broken. I'm so tired of watching him take an apparent step forward only to have it ripped away a day or a week later. I'm tired of watching him suffer, I'm tired of not being with him, I'm tired of dealing with the heartbreak and the disappointment and the setbacks. I just want him to be well. I've been crying out for that. And I wonder, as I stumble along this path, if anything I thought was real is actually real.

As for the day, Logan did continue to improve. Adam's mom called a little while ago to update me and dealt a blow when she said that the next surgery -- the second attempt to remove the mass -- won't be for at least another 10 days. Of course, that's what neuro said; we'll see what oncology says. But the second she said '10 days', fear struck my heart like a bullet. We're not dealing with a slow-growing, low grade tumor. We're dealing with fast-growing, high grade material. Waiting 10 days could be the end of it all. It could negate the good work the chemo did. It could allow the tumor to wrap itself around the nerve fibers all over again.

I know what I should do here. I know I should just pray pray pray. But I can't. I can't see God, I can't feel God, I can't understand God. I don't expect to understand Him, per se. I just expect to feel loved, I expect to see Logan feel loved... and I don't see or feel those things. What's going on here -- our broken family, Logan's suffering, my own emotional strife... all of it -- doesn't line up with the image of God as a loving Father. And so I struggle. I know that it's easy to keep that view of God when you're not suffering. When you're in the thick of it... it's not easy at all.

I should note, just to be fair, that as I was putting Abby to bed, I did my Bible-flip thing and came to the story of Jesus healing the blind beggar. He clarified that the man hadn't done anything to cause his blindness; it wasn't from sin or something his parents had done. Rather he was blind so that God could show his power in the man's life. The tears spilled over as I struggled through the words. Are they true? Do the apply in Logan's life? Is it all lost for him when it comes to life on this earth? Will he use Logan to show His healing power? I wish I knew.

Anyway, I'm sorry for the negative post. If I know me, I'll be back to my usual self soon enough. We all have highs and lows, after all. Pray, if you wish. I want to believe, I want my faith and hope restored. But right now, it all seems so far away.

Wednesday, February 9, 2011

Cracked.

That's me. I feel like I am the aftermath of an earthquake: The ground shook and trembled, and now I'm cracked, fractured, broken, whatever word you may prefer. Mentally, physically... you name it. That's me. And on top of dealing with the earthquake in the past, I live in fear of aftershocks, too. I've been calling, crying, whispering, groaning out to God and... nothing. At least, nothing I can see or feel. And I'm so very tired of it all.

At this moment, I'm upstairs in my bedroom. It's 10:20 PM and my dear little Brady is downstairs, safely in his portable crib, screaming his precious head off. Just as he's been doing for the past 4 hours. I couldn't take it anymore so a few minutes ago, I put him down, tried to give him his pacifier (which he unceremoniously rejected with a filp of the tongue) and came to my room for a few moments of respite. I don't know what's bothering him. I can't figure it out. I've been careful with my eating, since he's sensitive to dairy protein and soy, but apparently I must've made an epic error at some point. I prayed so fervently to God for a mellow baby just this once, but no. It didn't happen. And now I'm home alone with a screamer while Adam is at CHO with Logan. My life is not fair. I don't think I've whined much lately, so I feel like it's okay for me to complain a little. So yes: MY LIFE IS NOT FAIR.

Logan had an okay day. His brain pressure (I'd use the technical term, but frankly I'm not sure I can spell it and don't really understand how it all works anyway) stayed consistent overnight and into today, only rising above Dr. Sun's threshhold of 20 when he became agitated over this or that. He spent much of the day sedated and with his eyes closed, but he was aware and responsive, and all of his neurological evaluations were normal. Just before Adam and I changed shifts, I patted his little hand and said 'do you want me to go get daddy?' and he nodded, just slightly. Then for some reason, I asked him to look at me, and he opened his eyes, just a crack -- his eyelids are very swollen, so it's the best he could do -- and looked up at me. And I felt something inside me release a breath I hadn't realized I'd been holding. He's still in there, I thought. And it was such an amazing relief.

A CT scan showed that there was no additional bleeding and that the swelling appeared normal for the circumstance. A team of nurses and a respiratory therapist opted to remove his breathing tube mid-afternoon, which was great, since it broke our collective heart to see him crying at times, his body heaving and shaking, tears rolling down his cheeks, but no sound escaping his lips. I did have to restrain myself from smacking the RT; she took forever suctioning, and then she'd start to remove it and stop. I'm pretty even-keeled when it comes to all-things medical, but it irritated me that she told Logan she was going to take it out 'right now' and then she made him wait 5 minutes. Not cool. His life is hard enough without someone jerking his chain.

The Usual Suspects came by to see him and check on his progress, filtering in and out throughout the day. Dr. Sun, his nurse Sue (who, according to Adam, took one look at him and immediately said I'm sorry, and then proceeded to ask how we were all handling what had happened), Dr. W (the transplant doc), Dr. T, Philippa, Molly.

And it was a brief conversation with Molly that left the deepest impression of all. I bumped into her as she was on her way into the PICU to see Logan late this afternoon. She asked how he was doing after yesterday's surgical incident, and I said okay, that he'd been extubated, was talking, watching TV, and so on. I noted that he'd lost a lot of blood and that we were glad that he seemed to be on the mend. And then she said it: Yeah, it's hard to lose 5 or 6 units and bounce back quickly.

Wait, did she just say 5 or 6?!

I said that I thought Dr. Sun had said two, but she seemed fairly certain that the report had indicated that he'd received either 5 or 6 units. I thought back to Philippa's earlier remark that Logan had single-handedly had the blood bank hopping, and to Dr. T's revelation that had a less skilled surgeon been involved, things may have ended... differently, to which I replied that we were definitely aware that he could've bled out on the OR table. I just hadn't realized, until Molly said 5 or 6, that he'd been extremely close to doing just that. When you consider that a 4-year old child only has 6 to 8 units of blood in his body as it is, losing 5 or 6 is... huge. So though I'm upset with God for the crap that is my life at the moment, I'm also tremendously grateful that He helped Dr. Sun to stop the bleeding quickly.

Anyway, I need to go rescue my still-screaming infant from the horror of his crib. I'm too drained to be specific tonight, but keep praying. I'll just say that I'm running low on hope and faith. After the hellacious week we've had, between the news that the cancer had spread and the near-bleed out in the OR, I've just about HAD IT. I'm in near-desperate need of something really good -- really, intrinsically good, not a really good cork to a really bad problem. I hope that doesn't make me selfish, but I'm approaching the end of my rope. And I hope God knows it. And cares.

Tuesday, February 8, 2011

9:05

Y'all know by now that I have a proclivity for using the current time in my entries. It's an easy way to start writing when I know I want to share but just don't know how to start or what to say. It's sort of like discussing the weather: It's a harmless, even boring connector to more serious thoughts. So we'll see where I wind up this time.

I'm at home with Brady now, and Adam is in the PICU at CHO with Logan. Per Dr. Sun's orders, my sunshine is heavily sedated, intubated and attached to more machines than I can count. I'm not sure that you know heartbreak until you see your child lying completely helpless on a stark, white bed inside a curtain-lined, flourescent-lit room filled with a dozen other ill children. It's like being kicked in the heart. You want nothing more than to pick him up and hold him and hug him, but you can't. You can simply hold his hand, touch his cheeks or rub his leg. And with Logan this afternoon, even those inocuous, muted gestures of affection were risky, as he grew agitated and thrashed whenever he heard our voices nearby.

On some level, I'm probably still reeling over this afternoon's scare and coping with yet more crushing disappointment. But it's all very metered pain and frustration, probably because I'm tired. Mentally, physically, emotionally tired. Minutes after Dr. Sun let us know what had happened, I felt the anger rise inside my chest and I lashed out at God: WHY?! Why are you continuing to allow these things to happen? Why is my sweet, wonderful Logan such a target for such evil? Why won't you JUST HEAL HIM?!

But there was no response. At least, no words came to mind; no comforting verses surfaced from nowhere, no audible soundbytes floated from heaven and rested on my ear. At first I wondered why; why wasn't I getting confirmation that things were okay, that God was in on what was going on and most importantly, that he was there taking care of Logan? Doesn't He care? How could He do this?

It's torture wondering those things and feeling so helpless. Every time I allow myself to get upset, to get angry, I feel my heart fill with what I can only describe as a toxic, counterproductive rage. And then there's a beat, and I'm faced with two distinct paths: Continued anger, or acceptance. When I choose wisely, my thinking turns in another direction. And it happened that way today.

I remembered that God has given me confirmation of His healing power many times in the past. And I wondered if maybe, just maybe, despite today's happenings, I'm supposed to continue to rest in the Lord. Maybe I'm intended to take what I've already been given and allow it to comfort me now, even though I can't see God at the moment, I can't hear His voice and He hasn't sent me any new, tangible wisdom. After all, that's what faith is all about: Believing -- and continuing to believe -- that God is good and has a plan for all of us, even when things look dark and when times seem most desperate.

If I'm being honest, I can see God working in what happened in the OR. I didn't mention it previously, but Logan's platelets had risen substantially from last week, according to yesterday's lab work. He jumped from 69 to 129 over 4 days. It may not seem a huge deal, but when you consider that he'd been gaining 4 to 5 per day for the past few weeks, 129 was a huge number, and not terribly far off from normal range (low end 150). In addition, his clotting factors were also normal as of yesterday. Without a good platelet count and normal clotting factors, he could've bled out today easily. But he didn't. So I'm thankful to God for anticipating the strike and acting not only in the moment to help Dr. Sun and the team locate and stop the bleed quickly, but pre-emptively as well. What a blessing.

That's not to say that having faith in the midst of trying circumstances is easy. It's not. It's incredibly hard. It's hard to let go of the control, of the notion that somehow, I can fix what's going on with my dear little boy. It's hard to feel helpless. So I do what I can, ceaselessly crying out to God on my sunshine's behalf and bugging all of you to continue praying, to pass this blog on to your praying friends and their friends and their friends and on and on. To ensure that Logan is wrapped in a tightly woven blanket of prayers and held up to God with the hope of receiving His healing touch. My heart aches for that touch; for the fingertip of God to simply brush Logan's cheek and eradicate every evil cell that's taken up residence in his body.

So that's where I am. Or more precisely, where you can find my heart. (Or, even more precisely, the part of my heart that isn't lying on a bed in the PICU at CHO. Because the old saying is true: Having a child is like watching a piece of your heart walk around outside your body.) Despite my worries, my fears, my anguish and my exhaustion, I'm continuing to pray for healing, for God to reach out and brush Logan's cheek. I don't know when it will happen or how, but I wait for it, I pray for it.

In a more immediate term, I pray that the pressure in Logan's brain will remain stable and steady through the next 48 hours, and that whenever they choose to wake him from his induced slumber, he'll still be the wonderful, sweet, incredible boy that God created him to be. I pray that the resection will be rescheduled for as soon as is prudent, and that it will be wildly, unbelievably successful. Because as I believe, God is still in the miracle business, and I may be his mama, but I feel like Logan deserves a truly amazing one.

Please keep praying these things along with me. Please don't be discouraged, because discouraged people fail to pray and give evil a foothold to bring about havoc. Please stay strong for our family and for Logan. Keep your resolve and remember him when you eat breakfast, when you see a child riding a tricycle, when you see a toy car, when the sun sets on another day.

Thank you all and good night.

The Unexpected

Although we're not fans of it, we've come to expect the unexpected. And The Unexpected is precisely what we got this afternoon.

We were sitting in the cafeteria here at CHO when Dr. Sun entered sans mask and funny OR shoe covers. He made a beeline for our table and I felt a vague sense of worry set in. The first words out of his mouth were "Logan is fine". He got a little closer, took a seat and added "but I was unable to continue with the procedure".

I was flummoxed. And disappointed. Seriously, God? Seriously?! That damned tumor is still in there?! I thought, the panic rising in my chest. Was it inoperable? Did something look different than it had initially on the MRI, complicating removal? Nope. Nothing of the sort. In fact, he didn't even get a chance to try to remove the mass. Dr. Sun explained that an artery in Logan's neck -- one that was nowhere near where he was working -- had suddenly gone haywire, spurting blood. The bleed lasted only about 5 seconds, but necessitated a 2-unit transfusion. So yeah: A gusher. He said that his blood pressure dropped while they awaited the bags, but that otherwise, he thought Logan would be okay. The vein involved wasn't in the brain itself, rather in the brain covering. Dr. Sun said he'd briefly considered continuing on with the resection, but decided against it for caution's sake.

Logan will be kept in a heavily-sedated state -- along the lines of a medically-induced coma, but not as serious -- for the next 24 to 48 hours until they're sure that the pressure in his brain is stable. He has a wire meter in place that will help with that, and the bone plate that was removed for the operation wasn't replaced so if his brain does swell, it'll have somewhere to go; the bone is on ice somewhere here at CHO and they'll put it back in later. If all goes well, they'll try to do the resection again next week, but probably from the original incision site.

So what happened? Dr. Sun doesn't really know. He said that (and this is essential) he'd never had that happen to him before during a procedure. A very gifted neurosurgeon with thousands upon thousands of hours of OR time under his belt had a new experience with LOGAN on the table? Yeah.

Prayer warriors, the other side attacked today, but God acted. Please get frustrated with evil alongside us, and pray prayers of protection for Logan. The next few days are critical in terms of determining what's next. Please pray for his health, his well-being. Pray that he'll come out of this experience as himself, and that he'll be well enough to try for the resection again next week. And please, recruit more friends, if you have them. There's something huge going on here.

Oddly enough, instead of being angry with God, I'm grateful that He had his hand on the situation and kept Logan from bleeding out. Now I pray that He'll keep His hand on the tumor and prevent it from growing as we deal with this setback.

I need to get to the PICU to see Logan now, but wanted to update and ask for continued, invigorated, ramped-up prayers. Nothing is ever easy when a battle is going on, but GOD is in control and WILL be the victor here.

Monday, February 7, 2011

Anxious

I know, I know: I shouldn't be anxious. I should rest in the Lord. But as I've said many times over, I'm merely human. And I don't care who you are: I maintain that it's hard -- nay, impossible -- to not feel a little anxious when your child is 9 hours away from neurosurgery.

So yes, I feel little bubbles of anticipation gurgling in my gut. The kind that prickle and pop and dance their way up the esophagus and into the back of the throat. But oddly enough, my primary emotion is probably no emotion at all. I feel numb, tired, overwhelmed.

It's probably because underneath it all, I'm scared to pieces of all that's to come but I need to protect myself for the sake of everyone else. While I know that the sole option is to keep moving forward, I wish with all of my heart that I could go back, if only for a little while. If I could go back, I'd re-live our trip to Disneyland last April. I'd re-play Logan's joy over driving the Autopia cars and the way he laughed and ran ahead of us with his big sister and best friend. I'd re-live our afternoon at California Adventure where we met Lightning McQueen and Mater, Logan's heroes, and where Logan and Abby posed for a serious of spur-of-the-moment photos that now rank as some of my favorites of all time. I'd giggle as they soaked themselves in the Bug's Life water play area and not worry that we didn't have towels. I'd go back to my co-op days in his preschool class last year, even though I was pregnant and feeling absolutely terrible. I'd watch him circle the playground on a giant tricycle or inside the big red and yellow Little Tykes car with the broken wheel. I'd watch with rapt attention as he danced on stage at the close of Vacation Bible School, and I'd laugh instead of getting angry on his 4th birthday after discovering that he'd sneaked into the garage and opened most of his presents by himself.

I know I can't go back. And I'm grateful that I've been blessed with those memories, even if they do make me cry at this point in my life. I pray that God will use tomorrow to open the door to many years to come for Logan and our family, and simply ask that you pray the same thing as you pray for the surgeon, his team, and our family unit.

We have an early morning ahead. Surgery is set to begin at 7:30 AM Pacific, and will likely last at least 8 hours. Please, Lord, let the surgeon safely remove the entire primary mass. (Adam asked this afternoon, and he's not going after the smaller ones, as they're very small and likely conquerable via the transplant cycle chemo.)

Thank you, and good night.

Sunday, February 6, 2011

Sunday Night

As the post-cycle 5 days of precious normalcy come to a close, we're faced with a lot of uncertainty. The givens are few: Logan will have his pre-op MRI, which will feature the little 'donuts' that will help the neurosurgeon see where he's poking during the procedure, at 3:30 Monday afternoon. Abby and Isaac will spend a few days with Adam's parents. The remaining four of us will trek to CHO once again, no doubt bleary-eyed, at 5 AM on Tuesday to arrive for 6 AM check-in and 8 AM surgery start-time. Adam, Brady and I will hang out at CHO all day on Tuesday during the procedure, tied to the little pager you receive when your child is a surgical patient and holding our collective breath between each hourly check-in call from the OR nurse.

That's really as far ahead as we can 'see'. I miss being able to make future plans. I know there IS a future out there, but it makes me crazy that I can't see it. I can't even pretend to see it. I wish I'd realized what a luxury is it to plan a vacation or a party back when my life was simple. But there's no going back: Life as I knew it is a thing of the past, and the present is all about... the present. Every second, every minute, but nothing beyond.

Just thinking about Tuesday takes my breath away. I prayed so very much that a second resection wouldn't be needed so on some level -- an unconscious one -- I'm probably still reeling from disappointment that Logan is going under the knife again. When I let myself really internalize what's going to happen, I feel fear. A lot of fear. So I avoid it. Probably not the best way to approach the situation, but I do what I need to do to survive. And a lot of my life is about survival right now.

But I suppose there's no point in agonizing over things I can't control, so I'll just share a tidbit from the day. When Adam came upstairs this morning to wake me up, he told me, smiling, that Abby and Logan were playing 'kindergarten' downstairs. My ears perked up and I could hear them chattering in the distance; it reminded me, once again, how much they love and appreciate one another. And it impelled me to once again cry out to God with a familiar plea: Oh, please let Logan go to kindergarten. It still breaks my heart into a million pieces to realize that I'm even in a position to say a prayer like that. It's not something I ever expected. And I don't know that it ever gets easier. At least, it's been nearly six months and it's not yet easier.

Anyway, I'm realizing as I type that I'm completely drained. When The Worst Cooks in America ends in about 7 minutes, I'm off to bed. But before I go, my prayer requests. Please pray for our collective health. We need Logan to remain as healthy as possible going into this week in order to avoid delays. As of today, he has a little bit of congestion and it really can't get worse without potential issues. Please pray for us all to have strength, courage, energy, patience and peace over the coming days. And as always, my constant prayer, the one that my heart whispers even as my mind rests and avoids the subject, is for Logan's complete healing.

Thank you God for my friends here. And thank you friends for sticking around and being part of Logan's team. Good night.

Friday, February 4, 2011

Friday, Hospitals and the Concept of Optimism

I'm going to shake things up this time and share my prayer requests before anything else. What can I say: I'm a rebel. First off, please pray that Logan will remain healthy. He's had a runny nose on and off, and we can't afford delays that illness can precipitate. On a similar note, please pray for Brady. He has a nasty cold. It makes for a difficult situation: Logan adores his baby brother and wants to hold and cuddle him often, but Brady's cold is something that Logan simply cannot catch. So please: Prayers over that tenuous situation. Pray for peace for Adam and I, and for wisdom, steady hands, good rest the previous night and discernment for Dr. Sun (the neurosurgeon) and his team as the surgery date approaches. Thank you so much for your support.

Today was tiring. We once again had a child in the hospital, but this time, it was Brady. I took him to the ER last night after his rectal temperature reached 101. He was alternately lethargic and irritable all day long yesterday, so it seemed the right thing to do given his age. He was swabbed for both RSV and influenza, and both came back negative, so we headed home at nearly 2 AM. This morning, he threw up what must've been 4 to 5 ounces of milk in a single sitting, soaking my side of our bed and scaring me. It wasn't full-on projecile vomit, but definitely powerful. When the pediatrician's office called to follow up, we decided that they should check him out, so Adam took him in for a 9:30 appointment. He called about 45 minutes later to let me know that the doctor had sent him back to the ER for further observation, and that I'd need to come feed him so they could make sure he didn't throw up any more mik. Heidi came to save me (thank you!) by staying with Logan and Isaac while Adam and I traded places.

I comforted Brady while they tried to draw blood from his tiny, delicate veins. It took three separate sticks before there was success. Of course, I approached it with an almost mechanical attitude; it's extraordinarily difficult to view a simple needle prick as a monumental event after watching another child deal with a central line for months on end. I felt badly for my sweet baby, but it was a tempered emotion. I think it would be nearly impossible for me to go through this kind of emotionally-challenging, heartbreaking experience without hardening myself just a little. It's a defense mechanism that sort of just... happens.

Anyway, they successfully drew the blood for cultures and a CBC, and then took him for an abdominal x-ray to check for blockages. Everything came back normal (though the cultures take 48 hours to fully develop), so we were again released, but not until after 4 PM. I'm exhausted. And I'm sick of hospitals. My prayer is that Brady will feel better very, very soon and that we'll be able to keep him out of the pediatrician's office and the ER.

I'm absolutely frustrated that my poor little baby is so ill, but I'm not surprised. I called out evil for what it is, and it clearly wasn't an appreciated move. But God is with us, so onward we go, dressed in our battle armor.

So that's all for Brady for now. Please pray for him and his health.

As for Mr. Logan, as I requested up front, please pray for his health as well. We heard from Dr. Sun today, and the plan is for Logan to go in for a pre-op MRI on Monday afternoon at 3:30 PM. We'll meet with him at some point that day to go over the details of the surgery. Dr. Sun said that the main mass is substantially more operable than it was initially. He said that much of it had pulled away from the delicate nerve fibers, though there are still parts of it that are enmeshed with nerve fibers that control facial movement and expression as well as hearing. Scary, yes, but much better than what was initially the case. So that was a relief. He also mentioned that the incision would be in a different location, further forward on Logan's head. I was sad to hear this, and I know how vain it is given the seriousness of what we're dealing with, but I hope that the scar won't be visible once his hair grows back in. It's terribly superficial of me, but I know that children are cruel, and I can't bear the thought that Logan might be subject to ridicule down the line because of a prominent surgical scar. He's been through enough. He deserves better than that.

Our ideal, if I may be so optimistic, would be if he could safely and successfully remove the entire mass (and all of its little cohorts). So please do pray for that: Pray that between now and then, the tumor will retract enough for him to be able to get ALL OF IT. It's a big, bold prayer, but as I say repeatedly and believe, God is in the business doing amazing things. He didn't choose to make it completely operable from the get-go, He didn't choose to make it shrink to nothingness via five rounds of chemo. Now would be an excellent time to completely eradicate that beast once and for all. But God knows best, so I'm doing my best to cling to that truth and not be discouraged if things don't go as we'd want them to go on the path to complete healing. After all, we still have two transplant cycles and radiation to go.

On Tuesday, we're to report to CHO at 6 AM in preparation for the resection. Butterflies flitter-flutter in my stomach every time I think about the procedure, but despite the worries that had clouded my vision and haunted me for the past several weeks -- and this is a peculiar confession, I realize -- the butterflies are less of worry than of nervous, excited anticipation.

I know that sounds strange. It feels weird to type it, to own it. But I'm excited for the future and for taking another step toward vanquishing the evil that is this cancer, even if neurosurgery is scary and I'd prayed fervently that it wouldn't be necessary. I trust that the Lord will have his hand upon Dr. Sun's hands and those of his teammates, and that He will guide them as they work. I pray that He will guide them to the successful and safe removal of the entire mass, and give them wisdom as to how to achieve that goal.

While I'm on the subject of unexpected anticipation and trust, I want to touch on the notion of optimism and the interplay between the three concepts. I've realized, over the course of the past 6 months, that I'm a closet optimist. I know it's amusing, but it's true. I've always considered myself to be a half glass empty kind of girl, but I've come to distinguish the difference between me and a true pessimist. I don't actively seek out negativity; I truly do hope for the best and expect it to happen. Unfortunately for me, that often means I wind up horribly disappointed when things don't go the way I'd hoped and planned. I realize now that that disappointment doesn't make me a pessimist, rather a disappointed optimist! Now, in light of our situation, I'm trying something new: Instead of allowing crushing disappointment to take over and send me spiraling into despair when things don't go my way, I'm attempting to change my perspective and to trust that despite a less than ideal circumstance, things will still inevitably turn out for the best. If you're a 'disappointed optimist' like me, I challenge you to change your perspective. It'll change your entire life, one snafu at a time.

So Tuesday's the big day. Please pray for everything I've outlined above -- and forgive the disorganization of it all! -- and recruit your praying friends, neighbors and relatives to join you. You have my sincerest, humblest thanks for your help and your kind support. Blessings for a lovely weekend.