Half-birthdays, Dancing and an Unpleasant Surprise

In a little more than an hour, Logan will be exactly four and a half years old. I've always paid mental tribute to half-birthdays, if only in a jovial sense, but this particular half-birthday is no joke. It's an accomplishment. An event to be celebrated in earnest, if only because back in August, I wasn't sure he'd make it to his half-birthday. So I'm grateful that we're here, on the eve of January 31st, and wondering how to most appropriately mark the occasion. Half of a birthday cake? Half of a present? Half of the birthday song? I suppose the possibilities are numerous.

Today was a good day for Logan. He cuddled next to me on the couch while we watched the original "Charlie and the Chocolate Factory". He gave me the latest news from Ponow, his home planet. Later there was plentiful enthusiastic dancing set to Abby's recital DVD from 2009; he knows just about every routine and does a surprisingly good job of reprising the moves. I routinely note to Adam that his joints are so loose and his limbs so free that I think he'd make an excellent hip hop dancer. I'd love to see that happen some day. He was also back in sweetheart mode, offering up lots of hugs, kisses and unsolicited I Love Yous that both gratified me and broke my heart.

It's so hard to be close to him. I know that sounds strange and backward, but it's the truth. It's hard to hug him and cuddle with him and listen to his affectionate words because it's so hard to imagine life without them. Given our circumstances, those thoughts meander in and out of my mind like children playing in a revolving door: They come and go whether or not I want them to do so. I have trouble living in the moment and enjoying it for what it brings because I let my fears about the future get in the way. I'm working on it; I'm working on keeping both feet planted in the present instead of one in the present and the other in the future. But it's so hard. It's so not me.

Last night after dinner, Logan came up to me with a huge smile, and put his hand out for a dance. We were watching "Beauty and the Beast" and the scene where Belle and the Beast dance in the ballroom was playing. So we danced. And memories of our first dance together came rushing back: He was four days old, and we were at a friend's wedding reception in a chic San Francisco bar. Our night was coming to a close, and Adam was talking with the groom across the room. So I took my tiny baby boy in his little blue outfit and wandered onto the dancefloor for a quick turn. I was trying to be cute at the time, but the memory is like gold to me now, so precious in its rarity and simplicity. When I returned from my trip down memory lane, I looked at my giggling, hairless 4-year old and felt tears sting my eyes as I wondered if we'd ever share another dance. Would we dance together at his wedding reception, bringing our first dance full-circle? I don't know. And not knowing is so painful for me. All of this is just so overwhelming, even now.

Even now, 5 and a half months later, a shock still courses its way up and down my spine whenever I realize the seriousness of our situation. No one expects the Spanish Inquisition. No one expects cancer. It's not on anyone's to-do list; an item that can be completed and then simply checked off with a pencil and forgotten. It leaves an indelible mark, a scar. I wonder at times if I'll always feel this way or if eventually the shock-value will wear off, leaving a hollow, stark sort of awareness in its stead.

I don't know. I do know that I discovered something today that put a damper on my mood. Adam left his email account open, and I saw that the oncologist from Boston had written back a few days ago with regard to the MRI films we'd sent for a second opinion earlier this month. I went cold when I clicked and read his words: He and his team saw no significant reduction in tumor size from the first MRI, but the contrast looked significantly better.

What?

So he and his team were essentially in agreement with the radiologist at CHO who had originally read the scan. I went into a tailspin and read the words over and over again, trying to process them, confused over why Dr. T and Dr. S had viewed what they all saw so very differently. Dr. T seemed so confident about his interpretation of the scans and so positive about Logan's progress. But now... I'm not sure who to believe. The doctor in Boston did note that the lower contrast could well be indicative of dead or inactive tissue, but all in all, their read was less favorable than Dr. T's. I was crushed. Deflated. My plush, hope-woven rug was yanked out from underneath me.

I know that there's no real reason to believe that Dr. T was wrong. After all, Dr. S concurred and he reads many, many neuro scans on a daily basis. And Boston doc did agree that cycle 5 of chemo was the right way to go, so he did agree that the treatment was doing its job in adequate fashion. But suddenly, my cushy comfort was gone. And no one likes to be thrust into discomfort.

But maybe having my rug removed wasn't a bad thing. Maybe I'd gotten too comfortable. Maybe I'd become a little too neglectful of intentional prayer-time and I needed a kick in the pants to get it together. As much as I feel tormented all over again, I'm also trying to view it as a blessing. The words may have been scary to read, but perhaps they were nothing more than a wake-up call telling me that I need to get back on my game and rally the troops all over again. As Adam noted, we do have another MRI coming in just a few days that will tell us more.

My, this has been a rambling, incoherent little ditty, hasn't it? I'm sorry for that.

Please keep praying for the MRI and for Logan's total healing. Amazing things can still happen. Though my world may rock and roll and shake like an earthquake, God is still a solid rock and He is the master of miracles. Bless you and good night.

Landmines

We've been remarkably blessed as a family when it's come to avoiding illness since Logan's diagnosis. And it truly has been remarkable with 3-then-4 children, including one in public school, a 2-year old who is out and about with fair frequency, hundreds of treks right past the oft-packed Emergency Department at CHO, and now, a young baby.

But it seems that our 'luck' has run out. Abby was off-kilter all week long with a runny nose and some mild congestion; she was crankier than usual and skipped a lot of her usual activities, including dance and extended post-school playtime at the park. She woke up in the middle of the night yesterday -- right as I was typing out my last entry, in fact -- screaming that her ear hurt. Ear infection was my immediate diagnosis as Dr. Mom, and I felt awful for her, since I had one myself a few years ago and know precisely how terribly painful they can be. She finally settled after I gave her some Children's Tylenol and a warm washcloth. I took her to see Dr. H yesterday morning. He couldn't see her eardrum because of waxy build-up, but took a listen to her chest and diagnosed a fairly severe case of bronchitis. (It always makes me feel just sooo competent as a parent when one of my kids goes to the pediatrician to address one ailment and he finds another one that should otherwise have been as obvious as a hot pink sheep in the middle of a field of white ones. But I digress.) So she's now on antibiotics, and is our Landmine #1.

Number 2 surfaced when I got home with Abby post-appointment and saw how horribly congested Isaac had become overnight. The poor little thing was just miserable, with dark circles under glassy eyes, drippy nose and congestion. Since he's a self-respecting 2 and a half year old, he's still been in go go go mode, but he's markedly more tired and certainly not himself.

So yes: Our two healthy, non-immunocompromised children are now sick, which means that the two vulnerable ones are at risk. On one hand, I feel the extra protection of God's hand on Logan and Brady; after all, when exposed to germs you'd think they'd be the first ones to be affected, but they weren't. For now.

On this rainy Sunday, I ask that you pray that Logan and Brady will remain healthy despite Abby and Isaac's illnesses. Logan's MRI is in two days, and he can't have it if he's congested or otherwise sick. It would be frustrating at best to experience a delay at this point in the process.

Thank you for keeping us in prayer and for lifting up our needs to God.

Before the Sun Rises

It's 4:09 am according to my trusty netbook's internal clock. Brady decided he wanted to eat about 45 minutes ago and much to my chagrin, I've been up ever since. Not just 'sort of awake', but full on up, thinking my usual muddled thoughts and trying to process a lot of ideas and concepts and feelings that my poor, tired, numb mind cannot handle in one stroke. So yeah: I'm here, if only primarily in body.

A lot of this will probably seem repetitive if you've kept up with me at all over the course of this blog's existence. Sorry about that; I think part of walking this path is repeating oneself at times, and having others there to hear you do it.

The feelings of being left behind have again resurfaced in recent days. I was warned early on by a friend with a like experience under her belt that at some point, my outward support system would weaken; that the numbers and expressions would dwindle. I should stop right here and say that I still don't begrudge anyone else for moving forward with life: It's good and right to enjoy the blessings God has given you. It's just that I was very spoiled early on in the journey with notes and calls and a veritable shower of well-wishes that I now feel, for lack of a better term, lonely. A lot of folks who were very vocal supporters early on have faded into the background, and since I'm being straightforward, I often wonder if I did something wrong or offensive that drove them away. I know I'll get at least one 'don't be silly! That's not it at all! response, but I do wonder. And I do thank you all for continuing to read and to pray, even if I can't see you doing those things.

And of course, to everyone who is still a vocal supporter (cookie-sender, meal-maker, encouragement-giver, all of you), I offer my sincerest thank you for handing me cups of water as I run this race of endurance. It's all I have to give, but I hope it's enough, and I hope you know how much your presence means to me on a personal level.

As for day to day life, we're here. All six of us, for the time being. It's been exhausting dealing with all four kids, but still good. Logan has been as normal as ever of late, which is a blessing. He's not as sweet as in times past, but he's here. He's still wowing me with his expansive vocabulary. Adam shared a funny tale with me about that very subject a few days ago. While he was at CHO, he was playing with one of his nurse's farm animal flashlights. When he shone the beam on his blanket, he mused aloud that it made an interesting impression on the fabric. An interesting impression. At age four. I know adults who don't know what impression means. Adam said that the nurses were amazed; I was amazed, too. Of course, I'm continually amazed by him and what he's able to accomplish... and endure. And I hope and pray that I'll get to continue to be amazed by him well into the future, even if my prayers aren't as fervent and frequent as they once were. That last bit is embarrassing to admit, but I'm just so mentally spent that I have a hard time connecting with God. Sad, but true.

We're just a handful of days away from the third MRI and I'm feeling bubbles of nervous anticipation beginning to spill over. While I'm not scared of what it will reveal, per se, I am afraid of being disappointed. I want to avoid surgery so badly that I can't even express the depth of the emotion in words. When I think of another surgery, my heart is almost immediately gripped by pure, untempered fear. I made it through the first surgery back on August 20th because I was securely wrapped in a blanket of shock, but with the shock value gone, the reality of neurosurgery is so intense, so cold, so striking. And so able to fill my heart to overflowing with fear of the worst kind.

Of course, even as I type, I feel a twinge of relief. After all, God and fear don't co-exist, so what do I have to fear? A lot. I'm still human. So I fear someone poking around in my little sunshine's brain, manipulating tissue and picking apart problem areas. The whole idea makes me cringe, even if I should just let it go. Even if I should just have faith that we'll get through it all. To quote a country song that's a decade or two old, I do... but I don't.

So where does all of this leave me? Just... here. And asking for prayers once again, as I've done from day one. Please pray for peace for all of us. For positive news from the MRI on February 1st. God knows my feelings on surgery so my personal prayer is that he won't need another go at it; lest he should, the date would be February 8th. Please also pray for good health and unity in our home; Abby has the sniffles and has had a very up and down sort of week, and I noticed Isaac's nose running yesterday. Primarily, we need Logan to stay well so he won't fall behind with his treatment protocol. For me... I just keep coming back to peace. Peace, peace, peace. Between the screaming, shouting children and the baby with the food issues, I haven't had much of it lately. And it takes a toll on my well-being.

Finally, as always, please pray for Logan's complete healing on this side of Heaven and protection from relapse. (If I've learned anything at all over the past half-year, it's that I need to be specific with these requests!) I believe that God heals, fully and completely and miraculously. I look at the paralytic with the devoted friends, at Jairus' daughter, at the lepers by the fountain. There are so many scriptural cases of healing and I claim them all as I walk this path. I want to cry hysterically on Logan's first day of kindergarten. I want to do it all over again when he graduates from high school, goes off to college, gets married... all of those things that as parents, we take for granted will happen from the moment we hear our child's first cry after birth.

Thank you for supporting us and for being a member of Logan's team. Blessings to you.

The Logan Update: 1/26/2011

It seems I've been remiss in updating! Thanks to Jen for the swift kick in the keyboard. (And happy birthday again! How did we get so old? Wasn't I just sending you an email wishing you a happy #21 just last year?)

Anyway, Logan did indeed come home as planned at the close of my last entry. He's been about as close to normal as ever, save a few vomiting spells and some extra whininess. (And his dogged refusal to don day clothes in the morning.) It's nice to have him here and comfortable. A blessing.

And it makes me realize how crazy my life has become! Three kids was a breeze for me; the toughest part was remembering that extra little warm body. But four is a different story. It's all about the chaos.

But today I'm choosing to be thankful for that craziness, because had things gone differently over the past several months, my house might be quiet. So I thank God for the noise, for the insanity, for the mess, for the disorder, for the carpet that's never devoid of toys for more than 30 minutes, for the fussing, for the kitchen counter that's cluttered with artwork and for every time I've wanted to smack someone's tushie today. And above all, for giving me the chance to even feel that frustration via my FOUR lovely, rambunctious, nutty, sweet, precocious and just plain precious children.

As I've said before... praise the Lord anyhow! And in this case, BECAUSE.

The Truth

It seems that I can't go a single day without hearing some variation of it:

I don't know how you do it. I could never handle everything on your plate right now. I'd lose my mind.

I have a little routine: I hear the familiar words, smile, say that I do what I have to do because there's no other option, and then typically change the subject to something else. I see no need in dwelling; I'm not a superperson and I'm no more mentally, emotionally or physically equipped to cope with the hand we've been dealt than another other mother on the planet. While it would be tremendously self-gratifying to feel like I am unusually strong or remarkable -- and I do secretly love the praise -- it would also be disingenuous. I must give credit where it's due: The reality is that I'm strong because Christ makes me strong, day in and day out, regardless of whether or not I want to be.

Believe me when I say that there are days when I want to pull the covers over my head and remain enveloped in the warmth of my bed. Even now, I wake up every morning, come to the realization all over again that no, it's not all just a bad dream, and feel a modicum of frustration. And then I say a prayer (or 100), get up, and move on. Because it's what I have to do, and more importantly, because He gives me the strength to do it.

Now that doesn't mean that I'm okay with it all. I may feel a general sense of peace most of the time, but I'm still annoyed with God that Logan is suffering. (And truthfully, that any child at all has to suffer with cancer.) I tell Him every day that I'm annoyed, frustrated, upset, mad, whatever emotion it is that prevails at a given moment. He takes it. He knows how I feel. And the awesome thing is that despite my rantings and ravings, He still makes me strong each and every day.

Now that, ladies and gentlemen, is remarkable. I know that as a plain old human, I don't store that kind of grace in my personal reserves. I can't withstand someone yelling at me for hours on end and questioning my motivations and then turn around and not only forgive it, but hand the complainer an incredible gift.

And that's the truth.

*************************

And because this is Logan's blog (insert clever smilie here), I'll also update that his ANC was up to 900-something this morning and his WBC is 1.4, so he will be released this afternoon. Next up is the pivotal MRI on February 1st.

Thank you, as always, for your prayers!

The Logan Update: 1/23/2011

I've come to a frustrating conclusion: As time passes, it's increasingly difficult to focus long enough to type out a good update. I argue with myself over it all the time: Be lyrical! Be beautiful! Be real! Be expressive! I stamp my little feet and click clack at my keyboard. But it doesn't happen. I'm lucky if I can maintain the same thought long enough to create a structured sentence. Some day I'll return to my former glory, but for now, you're stuck with fuzzy headed me.

Mr. Logan is doing reasonably well. He's still at CHO, though there's talk of him perhaps being released as early as tomorrow. His WBC is on a very gradual rise; today it was .7, yesterday .4, the day before .2 and the day before that, .1. It's normal to see a slow rise at this point because particularly on the Headstart II protocol, the bone marrow has been battered and rebuilt itself so many times that it's very tired. Truthfully, given that he's on round 5, I feel like he's doing fabulously well with recovery, especially since today is only day 20. Anyway, in order to be discharged, his ANC needs to reach 500 (and he needs to continue to be afebrile). Adam called earlier and left me a message letting me know that this morning's number was 420, so he's very close to the release threshhold. Please pray for improved numbers come tomorrow, and of course, complete healing.

I could say so much more, but I'm wiped out. I can't even begin to explain how challenging it is to have a fussy, food-sensitive baby (and can I just tell you how bitter I am over that? That I've been blessed with yet another fussbucket? When I'm already coping with Logan and the other kids?) by myself most of the time on top of the emotional implications of Logan's illness. One day, when I feel more collected, I'll try to express it in words, if only because I think it could benefit me some day down the line when I'm looking back on this experience.

Blessings to you and yours, and thank you for continuing to pray for us.

Thursday Afternoon

There are worse places to be than sitting in a window with a view of the San Francisco Bay. If you've never seen it in person, you're missing out. When it's not socked in with fog, the water is a silvery blue and dotted with tiny white sailboats, and the North Bay hills -- which provide a stunning backdrop -- give off an almost mystical vibe. Nope. Not a bad view at all.

Of course, what that means is Logan is still here at CHO, and this afternoon Brady and I are here with him. He's still sort of languishing. Not in a 'cycle 2 misery' kind of way, rather a 'there's something going on with him and we can't quite figure out what it is' way. His WBC this morning was .1 rather than less than .1, so I'm praying that means that recovery has come a'knockin'. We'll have to wait and see how tomorrow's blood work comes back.

However, he's tired and low-energy, and seems to have a cold, which is odd since he's been on South -- the immunocompromised ward -- for the past several days. Prior to that, he was home for 36 hours, and prior to that, he'd been on South since the 4th. It's all really very mysterious. I'm trying not to give a cockeyed look at the 24 hours he spent on East because there's nothing I can do to go back and change it, but it's hard to resist the temptation to be suspicious. And annoyed, if I'm being completely honest. Anyhow, they're planning to swab his nose sometime today to confirm whether or not it's a cold.

They still haven't done the dye test to see if his line is infected. If it is, it'll be removed and he'll have a pic line placed in his hand temporarily. Apparently the line can't be replaced immediately or he'll run the risk of the offending bacteria settling into the new one and causing the same problems all over again.

So that's the current update. As I made the drive today, I reflected on the past months. On how although things are lousy now, I'm much calmer about it all. I'm not sure why. Maybe because I know the chemo is doing it's job, maybe because the next step is uncertain anyway and I know that infection doesn't automatically equal delay. Maybe it's because the holiday season is over, and there's nothing on the calendar that I want him home to celebrate in the near future. Whatever the reason, it's nice to not be stressing for once.

Thank you all for praying for us and for sharing Logan's story. Please keep up the excellent 'work' and I'll hopefully be back later with more focused requests; right now Mr. Brady is waking up from his nap and I need to get to him before the real fussing begins.

Unsettled-ish

Another day in the books. And I feel unsettled. Or, as the subject line says, unsettled-ish. Sort of unsettled.

It's hard to be away from Logan for long periods of time like I've been of late. It's hard to feel connected to him when we're apart. It's also hard to get a good feel for how he's really doing. Sure, Adam and his mom share the details as they see them, but I wish I could see for myself more often. There's something comforting about seeing things for myself; the second-hand reports just don't do it for me. At least, they don't right now.

Logan is okay, but apparently is having issues with his stomach and vomiting. I'm a bit concerned, since by this time in his previous cycles, the emesis was generally a thing of the past. Or in the very least, it was rare. Dr. T ordered a dye test to see if the line is infected; if it is, it could explain why he's feeling poorly. If not, well, then I guess we're back to square one.

I just want him to be well again. To be feeling like a 4-year old boy should feel. It quite literally took my breath away and made me take pause a few days ago when I realized that he'll be 4 1/2 the last day of this month. He started treatment just a few weeks after he turned 4. How has it already been almost half a year? I'm sad that he's been denied so much of his childhood and that he'll continue to be denied childhood for the months to come. I'm grateful for his sweet disposition and his unusual patience as I feel they've probably made the ordeal easier for him to handle, but I'm still sad. I grieve that loss of innocence, some days more deeply than others. But it's always a note of sadness lurking in the back of my mind.

Please pray for his WBC to recover very soon. Pray also for his doctors, that they'll have the wisdom to figure out what's causing him so many issues with his stomach. Pray that the root of the pain and vomiting will be apparent to them, even if it's not something that would be immediately obvious. And as always, please pray for his complete healing. I still believe it can happen, even as I'm exhausted and emotionally spent, and even as I feel increasingly disconnected from Logan and what happens at CHO.

Thank you once again and good night.

The Logan Update: 1/19/2011

Today's update comes to you mid-afternoon -- ta da! -- because for once, Brady is napping and Isaac is watching Curious George. I know better than to tempt fate (not a fan of that word, but you know what I mean) so I'll type quickly.

Logan is having an 'okay' day. His temperature apparently went up last night but never crossed 100 so it didn't count as a fever. Adam said he's lower-energy and his WBC is still less than .1 (insert sigh of disappointment), but at least his hemoglobin and platelets are still okay, so no transfusions today.

The doctor is going to have some test done to try to determine if his line is infected since he's had the same bacteria pop up and cause problems two cycles in a row. If it is, he'll have to have it replaced... again. I'm suspicious because we never had problems with his line -- no infections, no issues with flushing -- until it was replaced on Thanksgiving after The Incident. The new line that was placed has presented problem after problem, and it's extremely frustrating.

This whole thing is just incredibly trying. We're once again stuck in a holding pattern that's keeping my family apart and I'm fighting resentful feelings.

Speaking of resentful feelings, I have a confession to make. I know I'm big on saying that I value honesty and that I try to be completely straight about everything when I write. But I have been dishonest about one thing: When I think of all of the people I know and realize how many haven't said a word to us about Logan's illness, it really hurts me. A lot.

I know, I know: So many people don't know what to say. And I get that. But I've hinted that I'd like to hear from you all repeatedly, yet there are still so many folks who I'd once considered good friends who've yet to say a single word. If you feel too awkward to contact me now, that's okay. But please: If a similar situation arises for another friend down the line, please don't make the same mistake with him or her. It's really painful to feel like others don't care enough to take 30 seconds to send a single PM, even if it just says 'know that I'm thinking of you' or 'you're all in my prayers'. I'm sorry if this is really blunt; like I said, I'm typing really fast and don't have the time to filter my thoughts adequately. I don't want to alienate anyone, so feel free to take it all with a grain of salt if you wish. Just trying to be as real as possible, lest someone else should be spared a similar pain in the future.

Best to you all and thanks again for your support.

The Logan Update: 1/18/2011

I've been frustrated by my egregious inability to string together coherent thoughts lately. Thanks for bearing with me as I muddle through my semi-permanent postpartum fog. Hopefully, I'll re-emerge sooner than later.

Brady and I went to CHO this morning. On the negative side, my sunshine's WBC was back down to less than .1, so yesterday's .2 was probably a fluke. Darn. On the positive -- and there were more plusses than minuses today, thank God -- Logan was in good spirits. Still a bit tired, but perky. He got up to sing and dance with TV theme music several times, and sat in the window happily playing with his 1:24 scale Audi A8. (He has more than a little of his Uncle Bobby's car-love coursing through his veins.) When the doctors came by for rounds, he called them inside with a cheerful 'come in, come in!' Neither the doctor (Dr... M-something; I can never pronounce it!) nor the fellow could hear the rubbing sound around his heart today. A cardiologist will still review the scans, but it's good that it seems to be resolving itself... whatever 'it' was. Additionally, he also appears to have steered clear of developing mucusitis. That's a major blessing and a major relief, since the slow methotrexate clearance increased his chances of developing the nasty side effect. Thank God! His hemoglobin and platelets were both up courtesy of yesterday's transfusions. So all good things.

Adam's mom was with him this afternoon after I headed home to take care of Abby and Isaac. She reported that he'd continued to be feverless, and that he'd had a low-key kind of day, which included a 2.5 hour nap. I'm a little worried since 'lower key' Logan can often signal 'not feeling well' Logan, but we shall see.

In order to be released, he'll need to remain afebrile (no fever) and his WBC will need to begin the recovery process. So please hold those thoughts in your prayers, if you will. It would be nice to get him home again as soon as it's safe.

On a not-really-related and serious note, I wanted to be sure to say a sincere and hearty thank you to everyone who's stepped forward to help our family out in one way or another, whether it be meals or those ever-important prayers I'm always requesting (or something else entirely). I try my hardest to express my gratitude, but realize that I often fall short. This experience is so incredibly, unimaginably overwhelming and I'm merely human, so please forgive me if you've ever felt snubbed or unacknowledged. It's never my intent. So, thank you. Without you, I'd be far more lost, confused, befuddled and fuzzy-headed than I am. (And let me assure you, that's one super scary thought.)

Thank you for your prayers and for reading along with us. As for me, I have a fussing 5-week old who's currently demanding my attention so I need to get moving. Blessings to you and yours.

The Logan Update: 1/17/2011

I didn't go to CHO today. It's just so hard to get there with Brady in tow day in and day out. I want to be with Logan; it makes me sad to miss out on time with him. But prayerfully, there will be much more time in the future for us.

Logan's still running fevers on and off, but they've not been peaking nearly as high as the 104 he hit in the ER on Saturday. So I'm pleased with that. They were also able to isolate the bacterium that caused the infection, and it is indeed the same one he had last cycle, so he's been on the correct antibiotic all along. So praises for that, too. His hemoglobin and platelets were both lower than expected this morning at 6.5 and 15 respectively, so they re-drew and re-ran the numbers a few hours later. They came back at 7 and 16, so he received blood. (And his afternoon company, Adam's brother Eric and his fiancee Emily -- thanks guys! -- noted a substantial difference in his energy level once the blood got goin'. So I'll take the opportunity to thank everyone who donates blood and ask once again that anyone who's able please give when you can!) We're not sure why he didn't get platelets as well since 16 is very low, but assume that they're on tap for tomorrow.

The eyebrow-raiser from the second draw came in the form of the WBC: After being at less than .1 the first time, the second number came back at .2. Adam is skeptical, since just hours earlier, he had a zero-count, but as he also noted, there is a defined point in time when recovery begins, so the draws could've just been positioned around that time. We're taking it with a grain of salt, but it would be amazingly encouraging if he actually did begin his recovery process today, on day 14 of cycle 5. I'll find out for sure tomorrow morning when I head over to the hospital.

The other subject to touch on is the rubbing sound the doctors hear around his heart. So far, an EKG, chest x-ray and echocardiogram have all come back -- unofficially -- normal. A cardiologist is going to review the results and the scans as well, though. If there is an infection, it means a longer-term date with an antibiotic is on tap. If not, it could be the result of dehydration. There's a lot of unsettling uncertainty surrounding this issue, so please pray for it. I still think it's enough that he has cancer without having to worry about his heart, too.

On the positive side, his attitude and energy levels are both improved over yesterday and the day before, so praises for those things.

I think that's about it for now. Please keep praying for complete healing for Logan. For reduction in fever, for curing of his infection, for his heart. For patience and perseverance for us. For everything that God knows we need to get through this. Thanks for being a part of Logan's team. Blessings to you all.

The Logan Update: 1/16/2011

It's 8:38 PM. I'm watching something pointess on the DVR but my mind -- and if I'm being honest, a chunk of my heart -- is in Oakland with Logan.

One of his blood cultures came back positive earlier today, so he's on not one, not two, not three, but four different antibiotics. Not because he needs four, per se, but because they don't yet know which bacteria caused the infection, so they're covering all of the possible bases. His fever had dropped a bit and hovered around 100 degrees all afternoon, but apparently it went up again tonight, per Adam's mom, to 102.8. My poor little guy just cannot win. It's hard not to feel angry, frustrated, hopeless. It's just so horribly inhumane.

In other news, he had a chest x-ray and an EKG earlier today to take a look at his heart. The Fellow on service this weekend, Dr. Jacobs, heard a rustling sound around his heart this morning during rounds, so they wanted to be sure there's nothing unusual or worrisome going on. Unofficially, per Logan's night nurse Halima, they were both normal. Tomorrow he's scheduled for yet another look at it via echocardiogram. I know they're just being cautious, but it scares me -- a lot -- that they're so focused on his little heart right now. I mean, isn't brain cancer enough?

It's hard. I don't feel like praying right now, but I don't know what else to do. I'm irritated with God. I'm bothered that He's once again allowing Logan to suffer. I sang him "Jesus Loves Me" at the hospital this afternoon, but I felt hypocritical as the words tripped from my tongue. I mean: Does He really? Really? He may not be inflicting harm on Logan, but He's certainly allowing it. And that rubs me the wrong way. Of course, I'm his mother so it's extra hard to accept that 'crap happens' and that God's intentions here are still good. This isn't just watching my baby get a shot; there are some parents who are reduced to shaking, quaking tears by a simple needle prick. This is serious. This is true suffering. And I can't stop it or even make it all that much better. That's a mother's hell.

Of course, when things are awful, it just means there's a more pronounced opportunity for God to pull out all the stops and show us something amazing. So that's what I'm asking you all to pray for tonight: Something amazing. Healing. Total healing, reduced fever, eradication of tumors, curing of infections. Despite my frustration, my anger, my confusion, my doubt, I still believe that God is in control of all of this. (Which is why I'm so annoyed with Him.) And I believe that He wants to make Logan well again. I continue to believe that there's a war going on here, and that God stands ready to make a powerful statement in the near future. Please pray for all of that for us.

Thank you and good night.

Justified, Gosh Darn It.

I didn't want my fears about Logan being on 5East to be even remotely justified, but they are. Of course, it's all premature: All I know for sure is that he's back at CHO, this time in 5South. And I know that at one point this afternoon, his temperature reached 104 while on Tylenol, so I'm confident that he's where he needs to be, and that we did what needed to be done. Why it got to that point, I don't know. I feel like God has kicked me in the gut-- or maybe merely allowed me to be kicked in the gut -- once again. I know, I know: That's not fair. But it's simply how I feel, so I said it. And I know that my poor sweet boy is suffering yet again. And I know that I still fail to see how torturing a 4-year old with this kind of crap is necessary or fair. I don't know what he has or if he has anything at all; they drew blood cultures when he got to the ER before he was admitted, so we should know something within the next day or two, if there's anything to be known. It could simply be a neutropenic fever. Of course, he's had elevated temps from neutropenia during previous cycles, but never so high. So we anticipate to hear that there's an infection. Somewhere.

What I'm wondering about is the nature of the bug. If it's something that came from within himself (a la the line infection last round), that's one thing. If it's NOT -- if it's something that came from outside of his body -- I'm going to pitch a royal FIT over him not being in isolation before he was released. I don't care if they were full. They had no business giving him a roommate when he was neutropenic. He should've been put somewhere, anywhere, by himself. But it didn't happen. And oooh, if that's the root of this fever, you can bet your best brassy buttons that I'm going to let them know what I think.

Yeah, I know: It won't do any good. They know it was wrong. They were full. They tried. Blah blah blah. But it DID do good when I hit the ceiling over the missing c-diff cultures cycle 2, so you never know. I'm tired, I'm emotional, and they've pissed me off. Don't mess with mama bear or chances are good that I'll chew your hand off. Or... something.

In other news, Brady appears to be sensitive to not only all traces of dairy, but soy as well. He spent much of last night and today screaming. Incessantly. I'm angry over it; I remember praying fervently during my pregnancy that this one time, we'd be blessed with a good baby. And it didn't happen. He's cranky and fussy and super sensitive to foods, which means I can't even indulge in my faves because it'll send him over the edge and leave me regretting the indiscretion.

I'm struggling. None of this is fair. I know the good and bad comes in waves, but I can't see God anymore. I feel alone. And it sucks. I don't want this to be my life.

That was fast.

Well, up to 101, so back to CHO he goes.

Sigh.

Stuck in the Mud

It may not be particularly eloquent, but that's how I feel lately: Stuck in the mud. I can't plan a vacation even though we all need one really, really badly. Every time I hear someone say 'man, I need to get away from it all!' I have to bite my tongue and resist the temptation to scream 'NO! You have NO frickin' idea what it means to need to get away!' I can't go back home, even though I've not been for nearly 2 years and am craving the sight of familiar faces and places and an audience with people who care about me; with people I've known since birth. I can't make plans of any kind, really, because everything could change in 5 minutes. People keep asking me what Logan will do with respect to school this Fall. Had none of this happened, he'd be headed to kindergarten. Now I don't know. Probably another year of preschool. But regardless, I don't even have the freedom to mull it over because I still don't know what will happen between now and then. It's maddening. I feel like a dog tied to a pole in someone's backyard: I can run a little in a circle, but when I go to far, the chain yanks on my jugular and I find myself back where I began. It's not a fun place to be.

Anyway, Logan is still home, but I'm not sure how long we'll be able to keep him here. He's definitely not feeling well today. When I took his temperature a little while ago, it registered at 99.2, so he's skirting the limit and it's only noon. The only real positive I can think of it that it's day 12, so hopefully -- prayerfully -- he'll start to recover his WBC in 3 or 4 days. But you never know. There's nothing normal or standard about any of this so I never really know what to expect.

I continue feeling exhausted. I can't begin to describe the kind of strain this kind of thing puts on a family. When I recall last summer, I wish with everything in me that I could go back and that the perfect family that I had but rarely appreciated or recognized as such could be restored. That somehow, we could be divinely rerouted onto a better, less painful path. Sometimes I wish I could just take a break from being me, even if just for a few minutes so I can remember what it's like to live a normal, mundane sort of life.

To quote a Carrie Underwood song, please "don't forget to remember me". Or more accurately, us.

Air

It's been... a week. I don't want to qualify it with any particular word, but I guess 'frustrating' is workable.

Logan had an ultrasound this afternoon, and it did indeed reveal a very small pocket of fluid located in the area between his gut and his skin. So that explains why his meth number wasn't decreasing: It had collected in said pool of fluid and had been very, very slowly releasing itself into his bloodstream. Once the pocket was detected, Molly ordered Lasix (which flushes liquid out of the body via increased urine) and pushed the blood draw back from 2 PM to 3:30 PM so we'd give the Lasix more time to flush out the fluid. And as it turns out, it worked: His meth number this afternoon was .08. So he's home, finally.

I'm relieved. It feels like I've finally been able to come up for air. I was going out of my skin knowing that he was nearly neutropenic and unable to get a private room. Had he needed spend the night again, the plan was to find a way to boot *some*one out of South to get him into isolation, but it wasn't going to be an easy task. So thank God that he finally cleared that darn meth. I would've felt terribly about needing to kick another child out of South.

I feel like I've been through the ringer this week. Brady has had good and bad days; my birthday was a good day, but today and yesterday were dicey. Monday was awful, awful, awful. It's extremely difficult to be home alone with Abby, Logan and him overnight all the time, so I'm very relieved that Adam and Logan are back and hope with everything in me that it's going to be a longer-term stay. This is the time when Logan's temps get sort of crazy; his WBC this morning was .2, and we usually have a few days of elevated-but-not-too-high temperatures to get through before recovery begins and everything stabilizes again.

I'm truly worn out. It's hard to take all of the ups and downs and confusion and heartache. It's draining in just about every way imaginable. (And probably in ways that are unimaginable, too.)

Please pray for all of us. Pray for a calmer, happier baby in Brady. I know he has acid reflux, and the pediatrician put him on a med for that just yesterday. Pray that it will work, or that we'll figure out something else that will. Pray for patience and good attitudes for Abby and Isaac. And for health and healing for Logan. And for Adam and I... harmony. This kind of situation is extremely stressful and extremely taxing on a relationship, and we're really feeling the strain. And please pray that I'll have time and energy to pray. I've been so tired and frazzled that I haven't been able to muster the focus needed to pray particularly effectively. And it's hard to feel peace when I don't feel connected.

Just a quick anecdote to end this entry. As I was driving home this afternoon (before I knew Logan would be released), I was ruminating over the frustrations of this past week. Just when I felt I couldn't take it all for another second, I suddenly became aware of the radio. What was playing? It's all right, it's okay, it'll be all right again. Over and over again. A coincidence? No. Just a reminder that I needed in my emotional exhaustion. I just hope it's really the truth.

Thank you and good night.

Just Shoot Me

The meth level this morning? .1 . .01 too high for release. Oh, and he's almost at a 0 white count and there's nowhere else to put him on the floor, so he's stuck on gross East with a roommate and I'm sure all sorts of infectious diseases floating around.

^$&%*&*&$^

I feel like I'm going to explode.

I can no longer see God working in this and am just back to being angry. I'm not Superwoman. I'm not even that great a person. I can understand being stretched, but this is ridiculous.

Continued Frustration

It's been a frustrating kind of day. Logan still hasn't been released. When they did the re-check this afternoon, the meth level came back at .11... AGAIN. It's hard to not get upset over it. I don't understand why his body isn't clearing that bastard drug, especially since he did reasonably well with it the first four cycles. It's an odd anomaly. When I find two spare seconds to rub together when I can actually form a coherent thought -- and trust me, those times are scarce -- I pray ferociously and desperately that the darn stuff will just clear already so he can come home and avoid the mucusitis. At this point in the game, he's clearing SO late that it'll be a miracle if he avoids it.

On top of that, my sense of urgency quadrupled this afternoon when I found out he'd been moved to a shared room in 5East. Apparently a neutropenic child needed a room on South, and Logan was apparently the least sick of every single kid there. My gut reaction was 'yeah, right', but what can you do? You have to roll with it. 5East terrifies me because it's where cycle 2 began. He has to be in a shared room with no window access (which is devastating to him since he spends lots of time sitting and looking outside). He has to have a roommate, and God only knows why said roommate is hospitalized. Hopefully nothing contagious, but during cycle 2, they had kids in with him who were hawking up lungs at times. He could wind up with a zero-count as early as tomorrow, and it terrifies me to think of him being in a wing with kids who have infectious diseases. It actually makes me completely nauseaus. We've worked so hard with the treatment and he's been through so much already that it makes me physically ill to think of him being in that ward among people who visit even though they're sick.

I told Adam that I wanted him to ask the nurse to wear gloves whenever he/she came into the room to touch Logan. I don't care if it makes me a b!tch. I don't want to take chances that he could come into contact with something contagious via a nurse.

Yeah, not a great day for me at all. I'm trying to be positive. I'm trying to keep reminding myself of my own words from yesterday. But it's getting increasingly more difficult.

Just pray, pray, pray. I'm a broken record, but I can't think of anything else to do and I feel completely helpless.

Mid-Week Request!

Logan's meth number came back at .11 this morning, so yesterday's .22 was likely not a mistake or a misread after all. The nurses and Philippa were mystified by the jump, especially given that he'd been clearing pretty nicely up until then. Slowly, but at least the level had been low for a few days. Adam will ask when he gets there, but my assumption is that there's no real medical explanation for what happened. So where does that leave us? Right here; I'm quoting myself, my own entry from yesterday before the initial number came back and shook things up:

I'm hoping for the best; not necessarily doggedly hoping that it'll be below .1, but that God will make it what it should be in order to help the healing process along. There's so little clinical data on this kind of tumor that they don't know for sure what's best and what's not with regard to clearing. But God knows.

It's not often that my own words will chill me to my core, but this comes pretty darn close to hitting the mark. So perhaps the drug simply needed more time to do its work on the tumor. Perhaps this is a set-up for something miraculous and unexpected. Of course, there's danger inherent in being hopeful that this round is slowly knocking out the tumor in order to negate a need for another surgical procedure. But it's where my mind has gone.

Of course, having methotrexate in his system for this long gives him a much, much greater chance of developing a rollicking, awful case of mucusitis. In fact, if he doesn't develop it, it'd probably be a miracle. Since God promises to prosper and not harm His people, and because mucusitis is merely a side effect and has NO bearing on the tumor itself -- in other words, there's no good in it and it doesn't signal any positive thing going on in Logan's body -- PLEASE pray a bold prayer with me that he WON'T get it. Pray that God will protect him, insulate him from the awful, painful, horrible effects of mucusitis and that he'll remain remarkably -- amazingly -- well. It'd be nothing short of a clear demonstration of God's hand in all of this. And honestly, after the confusion of the past few weeks, it would be nice to see His hand very clearly on Logan.

Good Night

10:34. That's the time my computer's displaying right now. I'm on the couch in my family room. Adam's a few feet away screwing with his phone. Abby and Isaac are in bed. Brady is catnapping and ferociously chomping on a pacifier in his carseat.

It wasn't a great birthday. In fact, it was probably the worst I've ever had, ranking up there with #15, when I fractured my leg while checking the mailbox for cards. (It was icy and I slipped on the curb.) I tried to keep a good attitude, but my heart is just so broken. I feel defeated and frustrated. I hate the thought that if that number is correct, Logan will likely wind up stuck at CHO with a raging case of mucusitis. And I'm baffled: Once the number drops, it's supposed to STAY dropped. After all, no one gave him additional drugs. It just doesn't make sense. Did God do that? If so, is He going to protect him from said pain, or will my poor, long-suffering 4-year old be forced to go through yet more discomfort? It's so inhuman and awful that it makes me want to scream.

But I guess a lot of things about this life don't make sense. The takeaway is that despite my hopes, #33 ended up being a day I'd probably rather forget down the line.

Sigh.

It always sucks to start out a new year with disappointment, especially when you'd had said-birthday built up in your head for a long while.

Logan's methotrexate number came back at .22 this evening. Twice. Yes, it actually went UP instead of down. Everyone was baffled. Philippa said that she'd seen the number do that on rare occasion, but never when it was trending downward as Logan's had been. So she made the lab re-run the same sample. Still .22. All I can think is that they somehow exposed the sample to light, since I know that can screw up the result.

Logan is crushed that he can't come home. He cried when he told me they wouldn't let him go a little while ago. It broke my heart into a million pieces again. I'm frustrated because although I enjoyed a nice afternoon at CHO with him, the lab took ages to get the results to us. They told Philippa they'd have the number by 3, but we didn't get it until nearly 4:30. And then it had to be re-run because it seemed so wonky. And the second result didn't get to Adam until 6, so he didn't call his mom to cover for him until then, which means he won't be home until at least 7. Most likely later. So my birthday evening is pretty much shot. I have no cake I can eat (I do have one -- thanks J! -- but Brady's allergy means I can't have it, but the kids will love it so no worries), no birthday dinner and my family is not together.

I'm trying very hard to not be upset that my 'magical birthday' that I'd been looking forward to for years has, in reality, been pretty lousy. Really, really fighting letting myself get upset.

1.11.11

Business first: Logan's meth number this morning was a disappointing .12. Not an awful number in general because it's decent, but it means he's clearing late again, and he can't be discharged yet since it's not sub- .1. His nurse, Lauren (who also has a birthday today! -- Happy birthday, Lauren!), did a re-draw a few minutes ago so I'm hoping for the best; not necessarily doggedly hoping that it'll be below .1, but that God will make it what it should be in order to help the healing process along. There's so little clinical data on this kind of tumor that they don't know for sure what's best and what's not with regard to clearing. But God knows.

In addition, I'm SO pleased to report that Brady had a peaceful night (well, for the most part. He IS still only 4 weeks old so he likes to be up to eat a lot!) and seems to be back to his usual, calmer self today. Praise God! And thank you all for praying for him. I figure I ate something that didn't agree with him. I wish I knew what it was! But I do know that I'm now officially eliminating all traces of dairy from my diet. A moment of creamy bliss is not worth the hours of screaming.

Onward with my original intent here....

At the risk of sounding like Michelle from this season of The Bachelor (you'll absotively get the reference if you watch), I wrote the following last night in the restricted journal I keep elsewhere. I'd originally intended it to be private, but in re-reading, I decided I wanted to make it public because I think it's worth a read. (I hope that doesn't sound as conceited to you as it does to me.) It sums up my feelings on the past several months -- and actually, on the entire year -- quite well.

***********************

I'll be another year older in just a few minutes. Oh, 32, I'm not quite sure how I feel about you. I'm glad to see you go in a way, but it's also true that I've learned a lot during your tenure so I can't quite call it a 'good riddance' kind of departure.

While I've been 32, I've had a baby I didn't expect to have and felt my family come to completion for the very first time. I also got horrible, horrible news about another of my precious children that shook, stirred and devastated me in ways that are so close to my heart that I can't do the emotions justice with mere words.

Yup, that basically summarizes you, 32: Good and bad, joyous and devastating. Emotionally dichotomous. A year of opposites that've merged together to create a time that was nothing if not memorable. I think I've learned more about myself over the course of these past 364 days than during any other single year of my life.

I've learned that I'm both weaker and stronger than I'd ever thought. I've learned that even when I feel like I've been pushed to the edge, I can keep going. I've learned that when I can't keep going, it's okay to stop and rest in the Lord. I've learned that when I do reach the edge, it's okay to fall over because someone will be there to catch me. And that someone probably won't be someone I'd previously considered a good friend, rather someone unexpected who has no reason to be there for me other than a desire to be supportive. I've learned that there are many good people in this world, and that sometimes they want to help, so it's best to just let them do something.

I've learned that weakness isn't a fault, but a blessing because it forces you to re-discover your faith. I've learned that it's not easy to have faith but that it's essential to have it anyway. I've learned that prayer is the most incredible force in the world. I've learned to hope for the impossible and to expect miracles. I've learned to bite my tongue and smile when someone says just the wrong thing. I've learned that attitude may not be everything, but it sure means a lot.

I've learned that young children are the most amazing, resilient people on the planet.

I've learned that it's okay that I cannot control every aspect of my life. I've learned that there's good to be found in every situation if you open your eyes fully and allow yourself to see the big picture. I've learned that pain changes your perception, and not always in a negative way. I've learned that anger and bitterness are counterproductive. I've learned that I need to cry sometimes, and that if I just can't take anymore and break down where someone else can see me, I don't owe them an explanation. I've learned how it feels to cry wretched, pained, helpless tears that feel like they'll never, ever end. I've learned to be real one hundred percent of the time, even if it means that others might think I'm weird. I've learned that we all have our figurative crosses to bear, and that even if mine are larger than yours, it doesn't make yours any less challenging or meaningful to you.

I've learned what it means to feel gratitude. I've learned to hope, to feel joy.

I could say more, 32, but it seems that your time is up and I've now moved on to 33. I'll take what I've learned and move forward day by day.

Monday

As irony would have it, Logan and Brady were both sleeping until the very second I sat down to type this entry. At that precise moment, Brady started screaming. Fortunately I was able to just pick him up, walk down the hall and then put him back down again without issue. So I guess all of that means I should make sure that I say what I'd planned to say, huh?

Logan's 24-hour methotrexate number came back at .9; they like for said number to be between 1 and 10. We were a little concerned that it was too low, but nope: Molly explained the number by saying that it was likely due to the fact that they'd increased his hydration since he was a day late clearing last round. Yesterday's number was .3, and this morning's, .17. So prayerfully, he'll be released tomorrow -- the number just needs to drop below .1, and he needs to not wind up with a fever.

So what's so special about tomorrow? Well, it just happens to be 1/11/11, my 33rd birthday. The one I've been looking forward to for years for purely 'the numbers are just too stinkin' cool' reasons. I hadn't thought for even half second that he might be home in time to celebrate the start of my next year, but it's a distinct possibility and it wows me.

I think I spend too much time underestimating God.

His hemoglobin was a bit low this morning (7.4, I believe), but they're holding off on a transfusion. The doctor on service this week, Dr. Garcia, doesn't think he'll need one for a few more days; something about the extra hydration diluting his blood and artificially decreasing the number. So we'll see. Hopefully the number won't drop like a rock and necessitate a transfusion tomorrow.

Okay, I've been ordered to draw a Christmas tree, so I'm off to work on that.

H.E.L.P.

I'm breaking the mold here to post about Brady, but I really, really need some help. The past two days have been horrible. My first three babies were all awful fussbuckets from 2 weeks on. They nearly drove me insane with their incessant crying and screaming. (And I mean incessant. I don't think I saw Logan awake and not crying until he was 4 or 5 months old. It was THAT bad.) Logan and Isaac both had severe dairy intolerances, so I started off with Brady by eliminating ALL traces of dairy from my diet. And it seemed to work beautifully until a few days ago. Now he's crying all the time and awake all the time, so that means I don't get to sleep and I have no help overnight (or during the day, for the matter, but it's less intense then for some reason because I'm *supposed* to be up during daylight hours anyway).

Anyhow, PLEASE pray that whatever is bothering Brady will clear his system and that he'll go back to being a mellow baby for me. I absolutely cannot take another cranky, horrible baby. On top of everything else, I feel like I deserve a baby who doesn't cry all the time. I have too much other drama in my life and I need a good baby. I NEED one or I'll fall apart emotionally. Thank you.

The Logan Update: 1/8/2011

I can't believe we've been on this cancer journey for nearly five months. Intellectually I know it's been that long since I stood tearfully quivering in the pediatrician's office as I absorbed the news; my first thought was this is my fault; I was upset over having three boys. The heart-piercing pain and terror are still remarkably fresh in a physical sense; when I let myself go back, I can feel them all over again. But emotionally, wow. Time can truly fly by. And in many ways, it has.

Today was a good day for Logan, I think. The past few days have been marked by many, many, many complaints of boredom. While it's annoying to hear an incessant stream of 'I want something to do; I'm bored's, it's also a relief since it means he feels well enough to BE bored and to complain. He had a brief nap in the afternoon, and drove the car around the floor a few times, beeping at the nurses' station as always and doing his crazy little dances. He also enjoyed shooting paper airplanes toward his door; his room this round is right next to the nurses' station and it amuses him. A lot. And honestly, I think he amuses them, too, so it's a win-win situation.

His morning nurse, Stephanie, remarked on how well he's done so far. She was wowed when I told her that the MRI showed that the mass is down to 15 to 20% of its original size, and was -- her word, really! -- amazed by how he's handled it all and how well the tumor has bowed to the treatment. I wish I'd had the guts to say it aloud, but I thought it to myself: God does amazing things. We have to expect and ask for amazing things if we want to receive them.

Last night he finished the last drug of cycle 5, and is currently in the process of clearing said methotrexate. Even during the disastrous cycle 2, he still cleared it reasonably well, so I'm praying for more of the same. And then there's a lot of waiting until February 1st, when we have a third MRI to see how things look.

I have a lot of muddled thoughts floating around in my little head. After the emotional tornado that was last week when we thought the chemo hadn't worked, the past several days have felt like a tropical vacation (which I tell ya, I could really use! Hawai'i, here I come... eventually). I feel at ease, comfortable. But in the same breath, I'm trying to avoid feeling TOO comfortable; there's danger inherent in feeling TOO comfortable. When I feel TOO comfortable, I forget to pray, and prayer is still very much needed as we march toward Logan's eventual healing. I'm mindful of that, thank God. So I'm still doing all I can to remember to lift him up each and every day, multiple times a day.

And that's where I'll have to leave you for now. I'm finding that my thinking is far too muddled to say much else coherently right now. Thank you so very much for your continued prayers for Logan's recovery and for expecting miracles. May God bless you all richly.

Sunshine and Rainbows

It may seem a stretch to believe me when I say I'm seeing sunshine and rainbows -- after all, my kid is still hospitalized and battling aggressive cancer -- but it's true. I never really knew how intense sunlight could be or how bright a rainbow could look until I'd been through a really dark, ominous storm.

We're not completely out of the storm yet, but I can see the beginnings of light creeping over the horizon. Adam and I (and Brady, of course) met with Dr. T and Philippa at noon. He showed us Logan's past two MRIs -- after rounds one and two and the most recent one -- and pointed out the areas that the radiologist mis-interpreted. Even to my untrained eye, it was more than clear that the mass was markedly smaller. He said that it seemed like the radiologist mistook areas where the tumor had dissolved for areas with lower contrast. When I asked how much of the original mass remained, he guesstimated 15 to 20%. When I pressed for his thoughts on the scan, he said he couldn't be happier with how things are going so far, and seemed optimistic for the future. I can't even begin to tell you what a relief that is to me. He's a no-nonsense kind of guy, so it's hugely encouraging to see him so heartened by the tumor's response to the treatment.

So where do we go from here? Of course, we finish cycle 5. He's on day 3 and chugging along. He had lots of energy this morning, though at the moment he's snoozing thanks to some Benadryl and Reglan (which are given for nausea control). Earlier in the day he was be-bopping around the floor, singing and executing his patented dance moves and complaining that he was bored and wanted something to do. He has tonight's drugs, and then tomorrow is Methotrexate day. Hoping for good clearance again and a fast recovery.

Post-cycle 5, he has another MRI scheduled for February 1st to see where we are. Dr. T said that Dr. S thinks it's a long shot that this cycle will completely dissolve the tumor and that it's likely that he'll need another surgery to remove it, but we shall see. It's my personal prayer that he be able to avoid another resection, so please keep that wish in your thoughts and lift it up, if you will. Of course, God knows what's best on the road to healing, so whatever would be best for Logan's recovery is what I want most. If there is still residual tumor, Dr. S will go in sometime in early to mid-February to try to remove it. If not, he'll go straight to the transplant cycle, which involves 9 days of chemo followed by the stem cell transplant. Dr. T said he's responded well enough to the treatment that he doesn't think another stem cell collection is warranted -- in other words, he doesn't think two transplant cycles will be necessary to wipe out every vestige of the disease.

After the transplant cycle is complete, he'll begin 6 weeks of radiation: One hour per day, five days a week. They'll make a custom mask and then he'll wear it and be bolted to the table. Yeah, he'll need anaesthesia for that. Philippa balked a little, saying she thought he could do it without being drugged, but Adam and I just looked at each other and snickered: No way. He'd freak out. If the mask didn't get him first, being bolted to the table would for sure. Dr. T said they have very pointed technology when it comes to radiation these days, so damage to surrounding tissue is less likely than in times past. Because of the location of the masses, he said it's extremely likely that he'll emerge from radiation profoundly deaf in his right ear. I won't lie: I was upset to hear this part. But I have to take a metered approach and realize that a) he's done well with the drug that he's been receiving that usually costs kids their hearing; so far his has stayed normal and b) almost all of the radiation will be applied to the right side, so his left ear shouldn't be affected, or if it is, effects should be minimal. Those are things to be thankful for, even though hearing loss isn't an ideal outcome. I think down the line if he has to say 'yeah, I'm deaf in one ear but it's because I beat cancer', that's okay. I didn't really ask about developmental delays and effects; I couldn't make myself do it, and given that radiation is still several months away, it seemed premature anyway. Philippa noted that he's a smart kid so it's not like radiation would take him down too many notches, but still: It's scary.

So that's where we are for now. I'm immensely pleased with Dr. T's report and feel more at peace now than I have for months. I'm thankful to God for His provision and blessings as we've continued to muddle our way down this path. Please pray for excellent tumor response to this current cycle.

In addition, I have a few prayer requests for other members of our family. Please pray for Abby. She's becoming increasingly angry and aggressive as time passes, and we're not really sure how to handle it. The social worker assigned to us said that it's a completely normal response for siblings of cancer patients, and I'm going to see if I can get her hooked up with another kid or kids who have been in or are currently walking in her shoes. Also pray for Brady and Isaac to sleep at night. Since it's mainly me alone with them overnight these days, I could wind up being completely exhausted and that's clearly not ideal.

Thank you for your continued prayers and for following along with me as a ramble like an idiot. If there's any need I can lift up to God for YOU, please let me know. Blessings to you and your families.

The Logan Update: 1/5/2011

We're back to the same old-same old routine that we've grown to know over the course of the past 4.5 months: Logan and Adam at CHO, me at home with the other kids. Of course, things are a little more challenging on the homefront with Brady on the scene, but I manage.

Adam and I took him back to the hospital yesterday to begin round 5. Logan wasn't thrilled to be checking in again, but took the news with as much of a grain of salt as a 4-year old who's spent the majority of the past 5 months living in a hospital can take it. There was minimal complaining, and much sadness when the time came for me to head home. But I'm getting ahead of myself, as I usually do.

Philippa (who jokingly called herself my personal concierge, after Adam repeated my usual request that she try to start him out in the immunocompromised ward, if possible) successfully secured him a room in 5South and said we should aim to check in at 1. Logan chose Arbys for his final meal before the loss of his freedom, so we obliged. We headed to CHO and checked in more or less on time, though the room wasn't yet ready so we headed to the playroom for a few minutes while we waited.

He was pleased to see Molly again. He'd brought a bag of chocolate chip cookies to share with her and his doctors and nurses (though in reality, I'm pretty sure he intended that they be just for Molly!). It made me smile inside to watch him troll around, bag in hand, looking for her so he could share the treats. His check-in weight was a robust 16.8 kilos, up .8 from his official weight at the start of cycle 4.

All of his bloodwork and his creatnine clearance came back looking good, so Adam said he started the chemo at about 8 last (Tuesday) night. So for now, it's just a matter of finishing the round of drugs, clearing the methotrexate, and praying like the dickens that this last regular cycle will wipe out the rest of the tumor residuals so we can skip another surgery and go straight to transplant.

Tomorrow will bring a meeting with Dr. T, who we gather wants to explain what happened with the botched MRI read. Everyone we talked with yesterday was very concerned and confused over what had happened, including the on-call doc of the week, Dr. W. In reality, I think the hospital staff probably thinks we're more upset over what happened than we actually are; we're just so glad that not-as-great news morphed into good news that we don't really care much about the week of worry in between. Yes, it's always disturbing when there's a mistake made and it's upsetting to feel unnecessary strife, but everyone makes mistakes. So we're trying not to dwell. (And we'll have an explanation from Dr T soon enough anyway.)

Okay, well, I have more to say, but it's late and Brady has apparently decided that right now is a good time to scream his head off. Please continue to pray for Logan's complete healing and for protection against relapse over the course of the next few years. I'm trying to do better with prayer myself; I'm finding that it's true for me that when things are going well, I tend to forget to bring things to the Lord on a regular basis.

So off I go to cope with young Brady and to pray. Good night and my thanks to you all.

Gratitude

I don't think I've thought about the concept of gratitude as often as I have over the course of the past several months. I also don't think, in hindsight, that I knew what it was to be grateful -- truly -- until we learned that Logan had cancer. Sounds kind of backward, huh? But really: I don't think you can really grasp the concept until you've been forced to your knees and compelled to admit that no, you don't have control over the truly important things in this life.

Ironically, I verbalized that thought to Adam last night for the first time. Sure, I'd thought it plenty of times in recent history. But it's a big leap (for me, anyway) to go from proclaiming something mentally -- or even writing it out -- and actually saying it. There's something about the spoken word that makes a thought spring to life in a new and bold way. We were watching a DVR'd episode of SNL and I felt the feeling of uncomfortable uncertainty creep in, the one that had plagued me for the past week, ever since the initial MRI reading. And I turned to him and said what I'd been silently thinking for a week:

It's such a scary feeling to know that I have no control over all of this. I know it should be a comfort that God is ultimately in control, but it's very, very frightening to know that I have no choice but to offer Logan up to Him and just pray that He gives him back to us.

It was a relief to share my heart. And of course, today's corrected MRI reading was something beyond what I would've imagined; prior to that call, the best we'd hoped for was Dr. S. saying he thought he could operate next week and get the remainder of the mass. I never dreamed that Philippa would get back to us and say that the initial reading was wrong. I really never dreamed that she'd say that the chemo is still working so well that we may be able to avoid another resection period. Pretty amazing stuff.

Anyway, it's just another lesson in gratitude. Pure, unfiltered, unadulterated gratitude, made sweeter by the truly unexpected nature of its root. In one way, it's a blessing to be able to feel this kind of thankfulness, even as I'm frustrated to be dealing with this sort of situation in the first place. But I guess it's all just the essence of gratitude.

In the blink of an eye or a New York minute...

... everything can change. And everything DID change just a little while ago.

In an odd twist of something or other, it turns out that the radiologist misread Logan's MRI from last week. Philippa called Adam a little while ago and said that Dr. T. and Dr. S, the neurosurgeon, who were both away from CHO last week and unable to view the scans, finally had a chance to look at the images today from their onc clinic in Reno.

And they both agreed: For lack of more delicate terms, the radiologist who did the read was on crack. The tumors apparently had a great response to cycles 3 and 4. He's set to return to CHO tomorrow for round 5, which could very likely eliminate the mass(es) in their entirety and negate the need for any additional resection (surgery) at all. Praise God! (Although I admit that I'm a bit bitter that I had such a miserable week, ha. It's never fun to be forced to think about mortality, especially when it's your child in question.)

I just knew something was wrong with the read. I knew he was doing better than that, wonky-eyedness aside. I have no idea how it was misread so badly, but it doesn't really matter. What matters is that the treatment worked, he's actually doing better like I thought he was, and we're moving forward with cycle 5.

But why did God have us go through that terrible week? Maybe so I'd be more aggressive with prayer warrior recruitment. I can't really think of any other reason. I sincerely thank everyone who has taken the time to share Logan's story with friends and family. You're amazing people.

Please say some thanksgiving prayers for this news, and then pray for a great cycle 5. He's upset that he has to go back to CHO, but he's had three rockstar cycles, and the last two have involved only 7 or 8 days an in-patient, so we'll hope for more of the same with #5. Pray that this final regular cycle will wipe out the residual tumor and that it'll stay wiped out for good. He'll still have to go through a transplant cycle, which is scary, but wow, just to have hope again, real, justifiable, tangible hope, is an incredible relief. I could dance in the street right now, if I didn't think I'd be run down by a mom picking up her kid from the school. :)