Wednesday, June 29, 2011
Friday, June 24, 2011
I've had more than one fellow mama remark to me that they'd started to follow Logan's story but found it 'too close' emotionally to continue. I can understand that. I've walked away, so to speak, from similar situations in the past. It's a human thing to do, I understand why folks do it, and I respect the decision to do so.
That said, I challenge you to stretch yourself. To not walk away from someone who's facing a tough time. To make a conscious decision to be there to talk, read or even just listen and nod for someone who desperately needs a friend. It's horrible when your friends disappear, when the notes stop coming, when it feels like very few people care that your world is crashing down around you.
I can tell you one thing: It's not an easy thing to do. It's a task to stand in the gap for someone, realizing that that person will be unable to repay your kindness, watching them struggle and suffer and wondering if your efforts are genuinely appreciated. But it's such a vital task to perform. I only ask that should an opportunity arise, you be open to playing that role in a tangible way in your everyday life.
With that out of the way, I'll move on. Things around here are a-okay for now. Logan has energy to spare, and at yesterday's BMT (bone marrow transplant) clinic visit, the nurse coordinator told Adam that since he's doing so well --yet to require a transfusion and numbers low but steady-- he'll be transferred back to oncology sometime next week. Within the next few weeks, we'll meet with his primary to give consent to start some oral, 'just in case' chemo meds at home.
As for prayers, I have a few requests. The first and foremost, of course, is for health and complete healing for Logan. Despite the 'we think it's clean' interpretation of the MRI, it's hard not to worry. I'm doing what I can to let it go, realizing that life is meant to be LIVED and not frittered away via worries, but I am who I am. I've always been Type A and susceptible to health concerns and it's hard to just flip a switch and make my mind stop meandering along its well-ingrained path. We also need to feel peace and comfort. I loved the feeling of thanksgiving and gratitude I felt last week; I want to keep feeling that into the future. Finally, we could use prayers for the transition back to a 'normal' sort of life. Not that our life will ever be what it once was, but that we'll adjust well to what it is now.
I'll close with a thought that's been percolating in my brain for a few days now. I spent the time between August of 2010 and June of 2011 actively, aggressively interceding for my son, and I asked all of you to do the same. Every breath was a prayer some days. Since the MRI results came in last week, I've found myself slipping back into a less prayerful state. But I don't think that's the way life is supposed to be: I think we're always supposed to be vigilant prayer warriors, even when things look sunny and inocuous on the outside. Even when it seems as if the seas ahead are smooth and there isn't a cloud in the sky. So I'm going to pick up my armor once again, and ask you to do the same for Logan, and for the others in your life who are in need.
Thank you once again for your prayers. Have a relaxing weekend.
Thursday, June 23, 2011
Logan has been home for a week and a day now, and things are moving along nicely. He's had two clinic visits -- he goes on Mondays and Thursdays to be checked out and to see if he needs 'fill-ups', as he and Adam adorably call transfusions. So far, so good. He continues to amaze me with his resilience, and I'm so grateful to God for making my little man so very strong. So much stronger than I wish he had to be, of course, but that doesn't mean I'm not grateful anyway. His siblings have proven effective physical therapists; he's walking better and has much greater endurance than he did just a week ago. Better yet, he's just so happy to be here with us. So it's a joy worth celebrating.
Keeping up with the seemingly endless dosing of his medications is a challenge; he's currently on six different drugs, some once a day, some twice. We have a careful schedule in place so as to avoid missing any doses, but it's still a challenge to keep up and I often find myself falling behind here and there. It's not something I ever thought I'd be doing, so it's taken a lot of adjustment to get into the swing of things.
Anyway, it's after midnight and I need to get to bed so I'll be awake tomorrow. I awoke this morning with my left eyelid swollen and painful, and it's still sore even now, so I know I need rest. Thank you, thank you, thank you for your continued support and for being there for us. I appreciate you all more than you would ever know, for being our visible and invisible support system and for continuing to lift Logan up to God. We pray for sustained healing and minimal future side effects of the treatments he's received. But more than that, we pray to thank God for all He's done so far to make our little sunshine well once again. Good night to you and many blessings as you finish up this week.
Friday, June 17, 2011
Some day I hope you get the chance to live like you were dyin'.
I'd never spent much time reflecting on those lyrics until recently. If you're anything like me, you probably get caught up in pleasant music and sing along at times without really noticing the actual words. Once I cued in to what I was actually saying a few days ago, I was struck, and for several different reasons.
For one, I can say with utmost honesty that I didn't even come close to understanding what those words meant until August 16, 2010. I think we all talk about not taking blessings for granted, taking time to smell the roses, and appreciating every moment we're blessed to enjoy here, but it's hard to do those things with a full heart when life is easy; when there's never been a major hurdle to scale or obstacle to overcome. When you've never had a chance to be truly triumphant over adversity of the worst kind. So yes, I can say that I understand, through our experience with Logan, what McGraw means when he sings about 'living like you were dying'. I've been doing that for a while now.
But now that things have shifted for us, I want to view it not as living like we're dying, but living like we're living. I guess I should explain this a little more. Our cold, hard reality is that we'll probably never enjoy the level of comfort with Logan's health that 99.9% of you enjoy with all of our little ones. That's simply one of the indelible side effects of his cancer. As a result, we can continue to live in the shadow of the spectre of what could happen --live like we're dying-- or we can opt to reside fully in the moment, cognizant and accepting of our blessings, without allowing the darkness of cancer to dampen our spirits. We can live like we're living. See the difference? We can live in fear of each MRI --and there will be many more to come in the future-- or we can choose to live in earnest, without fear and with as much joy as possible.
It sounds like it should be a simple choice to make; option B is by far the superior one of the two. But it's amazingly hard to commit oneself to that kind of life of faith. Because that's what it is: A full-on life of faith.
In hindsight, I probably should've started this entry by sharing today's MRI news, since not all of you are connected to me on Facebook. After a very long night followed by a torturous morning that led into a nailbiter of an afternoon, Philippa finally called Adam with the read at about 2, as interpreted by Dr. T and the neuro radiologist. The scan was stable, and showed no signs of active disease. It looks, as she told Adam, clean.
Although we might've preferred to see absolutely nothing out of the ordinary --no scar tissue, no remnant dead tissue-- she assured us that it's good news. As badly as I want to jump up and down over it, the past 10 months have made me a more cautious person, so I'm just quietly enjoying the sense of relief. He'll be put back on some oral chemo drugs in a few weeks once his platelets stabilize, not because there's anything visible, but as a just-in-case measure. And he'll continue with his BMT clinic visits and evaluations.
As for me, I'll be working on living like I'm living, having faith and being thankful. Please keep praying for Logan and for our family; his kind of cancer has a high rate of relapse, so we'll need continued protection from that well into the future. But today is still the start of a new life, a new perspective, a new sort of reality, and for those things, we are beyond thankful to God.
Tuesday, June 14, 2011
Adam called earlier to let me know that today is the day: Logan is going to be discharged this afternoon. After 50 days in the hospital, he's finally coming home.
This time is different of course, because he's finished with his rigorously brutal treatment protocol, so there's no check-in date on the calendar. We're merely left to pray like mad that he's healed, that the cancer is gone and that it will never, ever return.
The whole idea leaves me breathless and tearful at once. I've used this well-worn cliche before, but I really and truly can't put the emotion into words. I just can't.
I'll leave you with this: As I was straightening some items on the buffet in my dining room a few minutes ago, I spied the stones that my lovely friend Barbara gave me many months ago. There are 10 to 15 of them, and each is imprinted with a word intended for meditation - faith, pray, wisdom, tranquility, gratitude, and the like. What was printed on the two I happened to see? 'Healing' and 'Hope'. How's that for a day like today? Needless to say, I slipped one into each of my pockets and there they'll be as we begin life anew as a complete family.
If I made you cry, I'm sorry; I made myself cry, too.
Monday, June 13, 2011
The next few days are big ones for us, with a substantial number of momentous occasions crammed into less than 100 hours. Tomorrow, Brady will be six months old. It blows my mind that he's already been brightening my days (and rendering me sleepless at night!) for half a year. Then on Wednesday, Isaac turns three. Brady and Isaac are, as is obvious, almost exactly, to the day, two and a half years apart. Thursday is Logan's MRI, which just so happens to fall 10 months to the day since a CT scan revealed the mass and this entire crazy, horrible journey began. And at some point over this three-day span, I hope, pray that he'll finally come home. To stay. Healed and restored. Never exactly the same as he was, but returned to a cancer-free state. Oh, how the idea makes me lose my breath. It's almost as if it's such an enormous thing to ask, to hope for, that I dare not do it. Yet I ask and hope anyway. Still working on Mark 11, but I'm doing the best that I can. I hope it's good enough.
Logan's done a good job of taking his medications orally over the past few days, though he does still vomit at times, and said emesis is indeed still bloody now and again. He had an endoscopy this afternoon --despite earlier assertions by the medical team that it wasn't really necessary-- and it showed that his poor little tummy is chafed and raw from the barrage of medication it's had to process. The GI doctor didn't find any alarming areas, merely a few particularly raw places that apparently periodically crack open and bleed. It was described to Adam as being similar to how your lips feel when they're very chapped and you yawn, causing them to split open and ooze. The same thing happens in my poor little sunshine's stomach.
Thank you for continuing to pray for Logan's complete healing and for, to be blunt, our collective sanity. Blessings.
Sunday, June 12, 2011
All of that said, I didn't go to CHO today; not because of the aforementioned reasons, but because I was horribly congested yesterday evening and this morning, and didn't want to chance taking a cold virus into an immunocompromised ward. Now that some time has passed and I'm feeling substantially better, I assume it was an acute allergic reaction to something or other, and am looking forward to seeing my sunshine again tomorrow afternoon. Adam reported that he's been doing fine with taking his medications orally, so I'm holding my breath that his release is imminent. Oh, please let it happen soon. He still occasionally throws up blood, but a GI doctor came by yesterday, talked with me and examined Logan, and seemed generally unconcerned, given the number of medications he's been on and the rigors of his treatment protocol. No one is surprised that he's bleeding. It's undeniably brutal stuff he's been through.
I'm still praying for healing, of course, but I'm also annoyed with God. And the emotion feels both awkward and raw, wrong and right. I know it's fair for me to be upset and to ask questions, even though I know they won't be answered. But still I feel guilty about doing so, and I feel mildly odd about avoiding church. I simply can't go right now. Adam goes and takes Abby, Isaac and Brady, but me... I can't. Not now.
Anyway, after this bizarre and rambling succession of thoughts, I'll leave you. Thank you for continuing to pray for Logan's healing and for our family. Blessings.
Thursday, June 9, 2011
It's hard to avoid being furious all of the time these days. Not just angry, no; furious. There's absolutely nothing that's fair about this. I learned long ago that life isn't fair; that many times, good things happen to people who really don't deserve them while awful things happen to good people. It's just the way things are in a fallen world. But that knowledge doesn't make this situation any less painful. And it doesn't make the platitudes that are often shared with me any less bitter. I confess than when someone reminds me that God loves me and Logan and our family, I often think yeah, right, easy for you to say that. You haven't spent the better part of the past year watching your child suffer. You haven't felt this kind of pain, heartbreak, disappointment, exhaustion. It's not that I'm unteachable; I've thought on that subject many, many times in recent months, wondering if I am merely unreachable. No, it's merely that it's hard for me to accept statements like those from anyone who hasn't been in my shoes. And yes, I do know that it's unfair of me. But it's the way I feel, and I vowed long ago that I'd be honest here. So there it is.
I feel like I've been running a race for the past 10 months. Not a physical, feet-pounding-the-pavement kind of race, of course --goodness knows I can't run a quarter of a mile these days--, but an emotional race, a race of mental endurance. Unlike an actual race, the finish line isn't visible, and it's maddening to wonder if we're close or still miles and miles away. I can't just radio ahead to my spotter to find out where I am on the course. Heck, I don't even know what the course looks like. Nope, I have to keep running even though my heart aches and my body is utterly exhausted. There's not really much of a point to that observation; I suppose it's just me trying to explain how I feel in more relatable terms.
Anyway, all of that aside, Logan is still at CHO. And I still don't know when he'll be home. We're waiting on him to be able to hold down his oral medications. He did okay with them today while I was there. He's still throwing up blood, but apparently that's not something that will hold him, as his counts have remained stable and they aren't worried over its source.
I'm never sure who reads this and who doesn't, so I'll ask that you please pray and ask fellow followers who don't always read to do so as well. We need energy to cope. I'm empty. We desperately need healing for Logan. We need a clear MRI. It's not really a 'We'd like this' kind of request at this point; no, we need it. We need normalcy, we need a return to our life. We need to have our family together, we need to not be at CHO every single day. The strain is really becoming too much. We need hope, faith, patience. I need to feel like our plight hasn't been forgotten, as school gets out and vacations begin. I need to know that we're being remembered, that Logan is still remembered. Because we're stuck where we are for the forseeable future. There won't be any vacations, no trips home, not much of anything for us this summer. And it stinks. Thank you for being part of Logan's team.
Wednesday, June 8, 2011
But it's not all bad. As I was driving to CHO on Monday, engaged in my usual grudge match with God, I finally ran out of things to yell and went silent. I felt enveloped in a sense of hopelessness until an old familiar thought came back to me: Although we're in an unenviable position right now --I know full well that no one reading this would change places with us!-- we're also in a unique place to see God move in ways that the great majority of the population will never experience firsthand. So I'm waiting on that.
I've also been working on claiming and believing, with my entire heart, Mark 11:22-24. In exploring my feelings, I've come to the conclusion that I fear embracing that scripture for two reasons. For one, I fear that I'll be disappointed. For the other, I fear that God won't come through, and that naysayers will use it as an opportunity to shake their heads victoriously and say 'see, I told you it wasn't real'. But really, what do I have to lose? So I'm working on it. Slowly working on it. But my heart is stubborn and I'm a skeptic at my core, so it's a challenge. I thank every one of you who believes --whole-heartedly-- in the veracity of those words.
I leave you with anothervideo clip-- click to view. This one was taken yesterday. Logan was up and about and playing for the first time in over a month. His walk is a little funny and his hearing is bad, but it's such a joy to see him embracing life again.
Thank you, thank you for continuing to pray and continuing to believe when I struggle to do so. I probably should've noted this sooner, but his MRI is scheduled for 6/16. Please pray for amazing results and a clear scan. Please.
Tuesday, June 7, 2011
Monday, June 6, 2011
As I think I noted last week, Logan was initially scheduled to be discharged today, but that changed a few days ago when he began vomiting blood. That probably sounds much scarier than it really is; the prevailing notion among the medical team is that his stomach is simply irritated by all of the medications, which is causing it to bleed small amounts now and then. He threw up a number of mid-sized clots over the weekend, and this morning had trace amounts of red blood again when he threw up. As a result of this, his medications were switched back to IV form; he'd previously been on oral medications to prepare for going home. No one is worried, per se, because his counts have all continued to improve and there's zero indication that anything truly serious is going on, but I do wish they'd move forward with an endoscopy to try to locate the area that's bleeding.
Thank you for continuing to pray for Logan and our family.
Friday, June 3, 2011
When his nurse this evening noticed that his chemo port dressing was loose, she decided it was time for a change, and there's little that Logan likes less than a dressing change. I held his hands and repeatedly asked him to look at me; he cried for daddy. When I finally managed to capture his gaze for longer than 3 seconds, I mentioned that his birthday is next month. (It's July 31st.) I asked him if he knew how old he'd be, and he said 5. Then I asked him what was special about being 5. After just a brief pause, he gained a sudden little burst of energy and replied, sincerity and excitement in his eyes,
You get to go to kindergarten when you're 5.
Right then and there, I caught my breath and felt my heart shatter into a million pieces: He's not going to kindergarten this Fall. And I realized that we'd have to tell him that truth at some point. It burned to realize that I'd have to disappoint him yet again, because you know, he hasn't already been through enough pain and disappointment.
It never occurred to me that kindergarten was even on his radar screen. I figured that school would be one of the last things on his mind, but no, he wants to make friends and have a routine and learn. And I can't give him that yet. It's so unfair. It's all just so horribly unfair. I know I say that a lot, but it's a foundational truth that I simply can't escape. There's nothing that will ever make this experience fair, and I suspect that on one level or another, I'll struggle with that truth indefinitely. But it is what it is.
Anyway, I don't have much else to write at the moment. I'm tired and largely uninspired, and have felt myself sink to a low place in recent days.
Thursday, June 2, 2011
I've spent plenty of time in recent days quite literally yelling at God over it all; over the horror that is cancer, over my frustrations, over my fears, over the excruciating pain of watching someone as precious and innocent as my son suffer through something so completely and egregiously un-Godlike. I have moments when it feels as if every bit of rage, every ounce of frustration every felt by anyone in this world are balled up inside my head and around my heart, threatening to blow at any moment. The unjustness of it all is simply too much to bear. But when I finish screaming and shouting and yes, spewing profanities, once I get it out, I feel better. Like I can once again handle tomorrow and all of the uncertainty that it'll undoubtedly bring. So that's what I do: In those private moments, I scream and yell and cry and get it out, because it's all I can do.
Thank you for continuing to pray for Logan's healing and our family's well-being. You are a blessing to us.
He had a decent day, but is definitely very, very tired and very, very, very weak. The BMT doc --who happens to be on this week-- told Adam this morning that he was hoping to discharge Logan on Monday. Monday! Of course, he needs to be weaned from the Morphine, off Oxygen completely (he's currently on a 2 litre nasal cannula) and a few other issues need to be addressed, but wow, to think that this entire journey could be nearing a happy end --because after all, Mark 11 is TRUE, people!-- is almost too good to believe.
Unfortunately, Brady is crying and it's much too late for me to be up typing anyway, but I felt compelled to post something. Thank you for praying when I can't. Thank you for lifting up my son and my entire family. Every single person who takes the time to pray for us is a blessing, and we're so deeply grateful for every single one of you.