Thursday

Every now and then, I let the harsh reality of our situation eat away at me. Today was, regretfully, one of those days. I woke up in a bad mood, and it snowballed from there. I think the weight of knowing that the MRI is next week --10 months to the day since we discovered that something was horribly, horribly wrong with my sunshine-- coupled with uncertainty over the future and the sheer exhaustion involved with coping effectively became too much to bear. The wall of "I'm okay-ness" that I've erected around my heart to protect both myself from the reality of my life and others from the awkwardness of dealing with someone like me cracked just a small bit. But it was enough to send me into something of a tailspin.

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.

6.8

It makes me crazy that I never have the opportunity to just sit down and write thoughtful entries anymore. I miss being able to share all of my thoughts. I miss having the focus to ask for prayers for specific needs. I miss my old life.

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 another video 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.

Very Brief Request

This one's for the prayer warriors among you. I've felt compelled to ask you all to pray for not only healing for Logan, but also protection for our whole family and for the entire prayer warrior team as well. So, that's my request for this morning. I've not yet heard anything from Oakland, but I see Logan is playing Farmville so I assume things are okay. I hope you all have a blessed day.

Monday

I owe a substantial update. It's just been difficult to write one, since Isaac has entered a particularly demanding 'look at me! Look at me!' phase and Brady is making leaps and bounds in the mobility department. And then there's the fact that we've entered the last week of Abby's time as a first-grader. Just a lot of generic busyness that culminates in not much time to write thoughtful updates.

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.

So for now, we're sort of on hold. I have no idea when he'll get out, but I'm hoping it'll still be soon. He has to go for a few days without any blood in his emesis before they'll even think about letting him go. I'm frustrated and feel, once again, as if a nice carrot was dangled in my face and then ripped away, but that's the way this entire wretched journey has gone. I crave normalcy but I guess it's just not time yet.

Thank you for continuing to pray for Logan and our family.

The Brink

Today was not a great one for me. I'm tired because Brady doesn't nap or sleep well. I can't focus on much of anything for longer than a minute or two at a time. Adam let Abby and Isaac drink almost all of the pricey Odwalla juice I treated myself to at Costco yesterday. Brady screamed all the way home from Oakland --that's 35 minutes-- so I couldn't stop anywhere for dinner. As a result, I'm eating a bowl of cereal for dinner since I can't have most pre-packaged stuff --since most contain traces of dairy-- and that's all we really have right now. Oh, and Logan and I had an interaction that ripped my heart out of my chest and stomped on it a few times. That too.

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.

June 2

Today was a long one for me. I spent a little more than eight hours at CHO with both Logan and Brady. The latter refused to nap save a 20-minute stretch that gave me little respite, while the former was mostly tired and weak, content to lie in bed and watch TV all day long. The lack of downtime left me exhausted by the time Adam's dad arrived to take over at a little after 6, and the strain of watching my sunshine struggle to do the simplest tasks was painful. It's utterly draining to watch Logan suffer, to watch his little hands quiver while playing Memory and his bird-like legs quake as he stands to relieve himself.

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.

Another New Month

This evening, Logan ate 10 Cheerios and drank an entire 4-ounce container of apple juice over a 2 1/2 hour span. Oh, how I wanted to shout it from the rooftops when he finished the last drops of his juice and his straw made that sucking, slurping noise as it attempted to vacuum out the minimal, unslurpable remainders. But that's what life is about these days: Celebrating the ordinary mundane details and recognizing them all as the achievements they truly are. (We just won't focus on the fact that he threw up said cereal and juice a few hours later.)

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.