About Us

Our family of 6 (dad Adam, mom Sherry, big sister Abby and little brothers Isaac and Brady -- who was born on December 14, 2010) joined the ranks of pediatric cancer fighters when our 4-year old son Logan was diagnosed with a dangerous and highly malignant form of brain cancer in mid-August 2010. Logan's cancer journey began abruptly on Sunday, August 15, when his right eye suddenly turned inward during dinner. Twenty-four hours later, we were checking into Children's Hospital Oakland and finding out that life sometimes takes you places you'd never, ever imagine yourself going.

Monday, October 31, 2011

More Prayers Please

It's like a never-ending battle for us.

Logan just isn't feeling well at all. He's extremely tired but unable to sleep at night, his blood count numbers are screwy, he has no energy and he's gone back to limping. I don't know why any of these things are happening and honestly, I guess the 'whys' of it don't really matter. Just as I did last week, I'm asking you to once again pull out the prayer stops for my sweet boy. Here's what we need:

1 - An increased hemoglobin number. I was surprised to find out this afternoon that his # on discharge was only 8.2. This is a very low figure for him, since he'd previously had figures in the 10s and up. We'd like to see that number rise to or above 10.

2 - A better TSH number. When it was initially tested, his thyroid stimulating hormone # was way, way too high; over 21. This can cause tiredness, lethargy, and a general ill-feeling. A lower number means a better functioning thyroid. Logan's was damaged by radiation, and though I'm not on the best of terms with God right now, I DO acknowledge that He can fix all things. Please ask for that. And for the correct dosage of medication to help him feel normal.

3 - This is a huge one: A clear MRI on Wednesday. To be blunt, decadron is absolutely ruining our lives. He's been on it for a month and a half now, and it's changed him for the worse in many ways. His personality and temperament are different, his outlook is different. He feels joint pain and restlessness. I understand that it's needed at times, but it's a miserable drug to take for an extended period of time. Please PLEASE pray that the scan will be clear, the swelling will be gone and that the team will be able to comfortably and completely wean him from it.

4 - For complete eradication of the Aspergillus infection.

5 - For health. Logan isn't feeling well. Between his low hemoglobin to the bad thyroid to the steroids, he's suffering. Please pray for health and for sustained healing.

6 - And one last thing I'm editing to add: For resolution of his gallstone. I don't know for sure, but I suspect that his periodic cries of pain in his stomach/abdomen may have something to do with its presence. Please pray that it will just GO AWAY.

Thank you for praying and for reminding your friends to do so and for passing word forward to others. My little man deserves better than the lot he's drawn. And I beg you to beg God to ask for better for him; I beg you to join me in moving the mountains that keep popping up for our family. We need help.

Saturday, October 29, 2011

A Heavy Coat

On days like today, the pain and heartache of all we've endured over the past 14.5 months rips and tears into my personhood, into the very essence of who I am on this earth. I suppose that sounds dramatic, but unless you've been me, I can't make you understand the depth of my frustration and disappointment and honestly speaking, hopelessness. Sometimes it feels as if there's a heavy winter coat weighing me down.

There was nothing particularly monumental or unusual about today. In fact, it was 'just another Saturday', and included a few of our normal ho-hum weekend activities, including lunch at Sweet Tomatoes (Logan's favorite haunt) and a trip to Walmart.

So I guess it was something about the conflation of what normal used to be -- 15 months ago -- with what it is now. There's something so intensely painful about comparing those two realities that I can scarcely breathe when I think about the contrast. It's like comparing fresh, untouched, purely alabaster skin with sun-scorched, blistered flesh. It's days like today that have a way of reminding me of what we've lost, of how our innocence has been torn away. To put it simply, my heart hurts.

I get upset whenever someone says 'well, you should just be glad Logan is alive'. Yes. Of course I am. I've seen amazing things happen. But at the same time, I don't think it's realistic to expect me to just be thankful for those things without feeling sad sometimes. After all, it's MY son who's barely recognizable thanks to steroids. It's MY son who can't dance because his legs are too weak or because of spinal issues -- not sure which; the MRI this coming week will tell us what's going on. It's MY son who's become a whining ball of complaints. He's not the same child he was 15 months ago. Cancer --evil-- took that away from us. I mourn the loss of that sweet boy, and I wonder if he'll ever be back. I don't know if God will restore him or not. And that breaks my heart, but the Logan I once knew was truly one of the best kids on this planet. He's still here, but his spirit is wounded. He's more cautious, less outgoing, more worried of what others think and less silly and carefree. It's true that he may have naturally evolved into the person he is now even without the scourge of disease, but I don't know. All I DO know is that the past year has changed him, and I'm sad over it. And I'm allowed to feel sad over it without anyone telling me otherwise.

I guess this isn't saying much. I have no pretty words to share nor any great observations, and certainly no grand proclamations of faith or hope. I feel tired and defeated and alone. And I write because long ago, I promised to be honest with you. So here I am.

Thursday, October 27, 2011

Home Again

There was a pleasant surprise awaiting me when I arrived at CHO this afternoon to sit with Logan: His discharge instructions were in the works! Adam packed up his things and took them out to one car, and then headed home in the other to do some work. Logan and I waited around for an hour or so for the pharmacy to ready his prescriptions and Philippa to come by with said discharge paperwork. I John Hancocked the form, went over the meds list, and Logan gave a good hug to Molly --who told him that he's her favorite little boy in the world and that she loves him-- and we were off.

Thank you for all of your prayers, and please do keep them flowing steadily. I'm amazed and humbled by how quickly Logan has rebounded from the aspergillus, and am so grateful to all of you for appealing to God on his behalf. Just a short entry tonight since I'm completely exhausted, but I wanted to share the happy bit of news.

Blessings to you and yours.

Wednesday, October 26, 2011

Wednesday

It's only Wednesday and the trekking from home to Oakland each day already has me feeling completely whipped. It's now an inextricable truth to me that only by the grace, strength and power of God did I manage to survive sustaining my pregnancy last year while existing according to this kind of schedule. I give all-new meaning to the term 'fried' right now.

Logan continues to recover from his mastoidectomy nicely. The ENT still has yet to come by to check his incision site and make sure everything is progressing normally (which is the root of no small amount of consternation, believe me), but otherwise we're doing okay. His Voriconazole (new antifungal medication) is now PO, which means 'taken by mouth' rather than intravenously, and we're trying to make sure he can handle the pain with Tylenol/Codeine rather than Morphine, since we can administer the former at home but certainly not the latter.

I learned today that his CT scan from Sunday showed a small gallstone, which is apparently not uncommon in kids who receive IV nutrition for long stretches, as Logan did. As a result, he started on a medication to break it apart, and the team will monitor its progress via CT. I also discovered that although his cultures haven't yet grown any bacteria, the sample taken from his right maxillary sinus during surgery grew a fungal spore. It's not surprising, since the aspergillus infection is in his right ear and that sinus is very nearby, so no one is terribly concerned. Hopefully, he'll be able to come home by the end of the week.

He was quiet but in a decent mood while I was visiting this afternoon. He spent most of our time together in the playroom making brightly colored pipe cleaner spiders. By the time I headed out, he'd amassed quite the army of multi-legged (and I say 'multi' and not 'eight' because Logan took a liberal approach to spider limb counting) little friends. He really enjoys coloring and creating things with his hands these days.

Thank you for continuing to pray for his continued health and sustained healing. He has an MRI scheduled for November 2 to check on the status of his spinal swelling, so please pray over that, if you will, in addition to the usual requests. Blessings to you.

Tuesday, October 25, 2011

The Surgery

I have to apologize; I know a lot of you were awaiting an entry about Logan's surgery yesterday, but by the time he got out of the OR, it was after 9 PM, Adam and I had traded places, and I was, to be on-point, emotionally spent.

The modified mastoidectomy (modified because they didn't remove the bone, rather cleaned it out) went well. The ENT said there were no complications and the team seemed pleased.

His release from CHO is dependent on a few items. For one, his pain needs to be well-managed. Right now, morphine is his friend, so he'll need to be able to get by with just Tylenol with Codeine. For another, they're waiting to see if the fluid removed from his maxillary sinuses grows any bacteria. If it doesn't, they'll be able to remove him from the antibiotic he's still taking. (The anti-fungal, however, will continue for some time to come.) There are a few other conditions that also need to be met, but the gist of it is that he could potentially be home by the very end of the week or the beginning of next. Of course our priority rests with doing what's safest for Logan, but it would be awesome if he could be home for Halloween and Abby's birthday.

Thank you for continuing to pray for Logan's health and sustained healing, and for the rest of our family as well. I confess that I've struggled mightily with anxiety --extreme at times-- over the course of the past days, and request that you pray for peace for me. I really need it.

Thank you, and many blessings from our home to yours.

Sunday, October 23, 2011

As the old hymn says...

Praise God from Whom all blessings flow.... (though I guess technically it's a benediction... or something... but you get the point.... *edit* Doxology, that's it!)

Logan had a CT scan of his thorax, lungs and abdomen a few hours ago to check for fungus in those regions. (Aside from the head, those three spots are the areas where aspergillus likes to make its home.) He did an awesome job of lying very still for the scan, and then we headed back to his room, where he made short work of the breakfast he hadn't been allowed to eat. (Then we ordered lunch.)

After he fell asleep, I sat by the window stressing over the scan, wondering when the doctor would come by with the results. I had a tough night, alternately worrying about the aspergillus and my concerns over Brady. I spent a lot of time begging God for peace, and then trying to accept it and hold onto it when it tries to settle into my heart. It's amazing how we can fight the very peace we ask to be granted sometimes.

A reasonably short window of time passed and a nurse came by to tell me that the doctor was on the phone; the phone in Logan's room is broken otherwise she would've called me directly.

The short of it is that neither she nor the radiologist who reviewed the scan saw any sign of fungus anywhere else. So... praise God from whom all blessings flow! I felt such a jolt of relief that I almost started to cry right there in front of the nurses (who were pretending not to watch me). Before I hung up, I pointed out that the redness behind his ear was less noticeable and that the swelling appeared to have gone down since yesterday, and she agreed. And seemed surprised; after all, just yesterday she told me that it typically takes about *a week* for the antifungal drug to start to show improvement in the host. Just to remind you, it's been less than 24 hours since he received his first dose of the correct med, voriconazole.

So there you go. Of course, he still has a long road in terms of getting rid of the fungus. He'll still have a pic line placed and surgery to clean out his mastoid bone tomorrow at some point. And due to its nature and prevalence in the environment --it's found in dirt-- it can recur. But just look at what prayer has done for Logan in such a short period! It's exciting to see. I humbly thank you for your prayers and help, and ask that you continue to lift him --and our whole family-- up.

As an aside, and while I have you here, I also ask again that you pray for Brady, and for me. I mentioned before that he'll have an ultrasound and EEG to check on the peculiar eye-rolling I've noticed, but I don't know when those will happen. I ask you to pray for peace for me, and for health and healing for Brady. I don't know if there's really something going on with him; part of me worries that he's having absence seizures, based on a few video clips I've seen, and the thought is highly disturbing. Though I did talk to the pediatrician about it yesterday when we were there (Brady had a fever), and he said that if he is indeed seizing, the type of event that I decribed to him is the easiest kind to treat. But clearly, it's not what we need. Of course, it's not what ANYone needs, but I feel like our family deserves a break. And health. So many thanks for praying for Brady's health as well.

Thank you again for your prayers and for continuing to offer them up on our family's behalf. Blessings and peace to you.

Saturday, October 22, 2011

Go to WAR for Logan, Please!

The culture of Logan's ear fluid grew something this morning: Aspergillus. It's pretty much the absolute worst thing that could've shown up. It's a fungus that is extraordinarily dangerous to immunocompromised people like Logan. He's been put on a strong anti-fungal IV antibiotic, and will be on it for some time into the future. The plan is to do a full-body CT on Monday to see if the fungus has taken root elsewhere. ENT will also likely go into his mastoid bone and try to clean out as much of the infection as possible.

I don't say this lightly: I am scared to death. Absolutely terrified. If it responds well to the anti-fungal, he will eventually be okay. If it doesn't, there's really nothing else that can be done. Aspergillus in the lungs has an extremely high mortality rate. Given that he's had a chronic cough for months now, I'm beyond terrified. He didn't beat cancer to have this happen.

Please, I am absolutely imploring you to pray for Logan, and to pass it on. If you can think of anyone else to share this with, PLEASE do. Imagine for a moment that it's YOUR child or grandson or nephew or best friend's son. I'm asking for NOTHING but continuous, fervent prayers for Logan's health and healing.

Friday, October 21, 2011

Mastoiditis

That's what it is. I was right. I hate that I was right, but it's a good thing that we didn't waste any time in getting him to CHO last night. So what does it mean? For starters, it means that he'll be an inpatient for at least a week, and as long as a few weeks, depending on how treatment goes. I cannot express how much I hate that. Yes, I *hate* it; that big, strong, ugly word applies. I'm so sick and tired of this crap happening to my family that I could absolutely scream.

So the details.... The head CT that he had overnight suggested that it's in an early stage, which made me breathe a huge sigh of relief, because untreated Mastoiditis leads to Meningitis. Adam emailed that the resident who saw him and looked at the image said that based on the picture and on Adam's assessment of Logan's condition, they think the likelihood of it actually *being* Meningitis is low. They pumped him full of broad spectrum antibiotics and drew cultures that will hopefully help them figure out what specific bacteria caused the infection in the first place.

I could Monday Morning Quarterback this to pieces, but I know it won't help at all to do so. I wish I'd taken him in two days ago when I felt like something wasn't right. I wish I'd insisted on going to CHO yesterday morning when Philippa said they were comfortable with him staying at home for the time being. But I can't change it, and it is what it is.

Just pray for us as we start another period of grueling separation. And pray for peace and wisdom for me; I haven't mentioned it in here, but I've been stressing mightily over Brady and this bizarre eye blinking/rolling thing that he does on occasion. I've asked the doctor about it and though he doesn't think there's anything really wrong, he agreed to set up an ultrasound of his head and an EEG. All because I'm a neuro mom, and this is the life of a neuro mom.

Thursday, October 20, 2011

Please Pray & Pass On - October 20

I'll be brief, since I'm stressed to my breaking point and just want to get it out there so Logan's team can get to work.

It seems that his simple, severe ear infection may have turned into something more serious. Even after beginning his two antibiotics on Tuesday evening, he continued complaining that his ear hurt. I took him to the doctor again this evening, and the suspected diagnosis is Mastoiditis, an infection of the bone behind his ear. It's extremely rare -- it happens in only 4 of 100,000 ear infections-- and it can be very, very dangerous. And that's in someone with a *normal* immune system. The doctor said a CT should be done to determine the extent of it, and then heavy duty IV antibiotics should follow. (Which will be a treat since he no longer has a chemo port in place.)

Needless to say, I'm scared to death. I don't understand why we can't seem to catch a break and I'm angry and frustrated and every other emotion you might imagine. PLEASE pray that the right course of treatment will be the FIRST course tried, and that God will touch him and heal him more quickly than anyone would ever imagine.

Tuesday, October 18, 2011

Tuesday Appointments

Logan had his audiology and vision evaluations at CHO this morning. Audiology was pretty much a joke, since he's been yelling for a few days now and woke up overnight complaining that his ear hurt, but the appointment was at 8 AM so there was no opportunity to cancel and reschedule. The result is that his left ear is normal, but the right isn't good at all. But as I was able to confirm at the pediatrician's office this afternoon, it is indeed infected, so it's hard to say how good --or bad-- the actual hearing is. He'll go back in a few months to test again. (For now, he's on Augmentin and Ciprodex drops to get the infection under control.)

The vision test wound up being more of a positive (and useful) experience. As it turns out, he hasn't lost any vision in his right eye after all, which is obviously excellent news. He's slightly near-sighted, but so am I. And so is Adam. And it's not bad enough to need corrective lenses. So where does that leave us? Surgery. The doctor told Adam that the nerve in his eye suffered damage thanks to the tumor's presence, so the only way to 'fix' it is to shorten the muscle in the eye, which will force it to track straight forward. The whole idea gives me the heebie jeebies, but I'm so grateful that his vision hasn't been impaired that I almost don't care.

I did say almost. It's true that things that would make normal, non-oncology parents cringe and have heart palpitations --like surgeries-- don't really get under my skin anymore, but some days are definitely harder than others. I've learned --the hard way-- just how unfair life can be. Though I've gotten better at letting negative thoughts and worries roll off my back, I still have my share of bad days, when I feel the weight of our situation and a sense of sad hopelessness sets in. I'm not saying that I'm there now; it's merely something of a perspective-check. But I am saying that I'm struggling a bit. I look at Logan and his puffed cheeks, his limp, his occasionally trembling hands (all things that his doctor attributes to the decadron, for what it's worth), the dark circles under his eyes, just the way that disease --and ironically, treatment-- has ravaged his little body. There's nothing I can say about any of it that's particularly heartening. It makes me angry and sad and frustrated. But it is what it is. I know that some day, his inner beauty will manifest itself externally once again, but for now, it's painful to see the suffering written across his face.

Thanks for your continued prayers. There's a lot of need here; please pray for peace for us, and for hope and belief and faith and all of those things that we desperately need just to get up in the mornings. Please pray for Logan's health; pray for wisdom for his medical team, for resolution of his limp, for minimal side effects as his decadron dose is decreased, and for an improved mood and outlook. Have a good evening.

Saturday, October 15, 2011

The Past Week, a Puffy Face & 'The Other Shoe'

I really should work on updating more often. By the time I get around to doing so, it always seems like I could type for hours and still not express everything I want to share adequately. Such is life, I suppose.

The past week was reasonably quiet. Normal, inasmuch as life is ever 'normal' for us now. The 'new' normal. Yes, that's it: The current new normal. All three older kids went to school each day as scheduled. Brady was feeling much better and assumed a semblance of a normal sleeping schedule. (Though he still doesn't come close to sleeping through the night. But that's a whole 'nother bag of kibble!)

As far as Mr. Logan goes, we decided this week that he needed to work harder on upping his physical activity level. And I don't want to say that the effort backfired, per se, but it definitely didn't go well. Since the issue with his spine popped up, he's become largely sedentary, refusing to walk or even get up unless absolutely necessary. Though this has meant that his fine motor skills have improved dramatically (which is wonderful), it also means that his little legs are stick-thin and lack muscle tone. And the act of making him exert himself physically is a major point of contention. I made him walk part of the way home from Abby's school a few days ago and he cried and screamed the entire time, complaining that his legs were tired and hurt. Every time we've made him walk on his own this past week, he responded in like fashion, with great consternation. And it's hard; it's hard because I know his little legs are weak and that they probably are tired. After all, they are grossly underdeveloped. But at the same time, he has to work on it. Anyway, he's also started limping at times, which is frustrating since we don't know if the change is rooted in the increased physical activity or something else. Obviously our prayer is that it's from the former. So please pray for that, if you will.

He's still on Decadron. Until this week, he'd managed to avoid developing the so-called 'moon face' associated with long-term steroid use, but no longer: His cheeks are so puffed and stretched that he hardly looks like himself anymore. It's heart-rending for me to see his beautiful face so badly distorted. I know it's just physical and that after he finishes his course, he'll slowly return to normal. But I can only imagine how horribly uncomfortable it is for him to be so, so swollen. One of the worst things about all of this is wanting so much to make it better, but being unable to push a button or flip a switch to make it so. It's just so unfair. So infuriating.

Anyway, as long as we don't see a marked change in his gait tomorrow, the dosage will drop to one pill two times a day, down from the current dose of two twice a day. So please pray over that as well.

And how am I? It's a mixed bag, really. People ask me that question every single day. I vowed a few years ago to always tell the truth when asked, so I don't shy away from pausing to think and then giving an honest answer. On one hand, I'm extraordinarily grateful that we are where we are. That I can call Logan a survivor. That I've had the chance to experience Christ in this way, to experience faith in this way, and to really rely on God. I'm grateful that I've had the opportunity to witness to all of you; that God has given me the chance to speak to you and to share what's on my heart, even when it's not necessarily pretty. Sometimes, it's all about that tiny mustard seed. Anyone with a mustard seed's worth of faith can move mountains, I think.

On the other hand, I'm tired. I still worry, though I know I shouldn't. Part of this process has been learning to live like the other shoe

isn't going to drop. In fact, as I reflected to a friend yesterday, it's about living like there isn't another shoe at all. It's about resisting the temptation to abandon faith and embrace worry. It's about recognizing when evil tries to plant a seed of doubt in my heart and refusing to allow it to grow. Forgive me for waxing philosophical for a moment, but this analogy's been on my heart for a few days now so I want to share it. I hope it'll mean something for at least one of you. Doubt and worry aren't of God. If you feel them, nip them in the bud. Don't allow evil to water that seed in you. If you do give in to bad feelings and worries, the tiny seed will grow into a vine that will choke you from the inside out, wrapping its arms around your heart, your mind, your soul, everything. So when you feel worries trying to sneak into and take root, cast them out immediately. It's what I try to do when I feel them taking hold.

See? I should really just write more often so I can create more pointed, succinct entries. But it hasn't been my recent mode, so you have my apologies. As far as prayers go, please do continue to pray for our family. Please pray for Logan's continued, complete and sustained healing. Pray for the reality of Mark 11:22 to be burned into my heart, our hearts. Pray for faith, hope, belief and perseverance. Pray for comfort for Logan as he deals with the side effects of the medications.

I want to close with something random that touched me. Abby and I visited the local Spirit Halloween shop today to search for a costume. The boys had already selected their wares last week (in case you're interested, Logan will be Finn McMissile from Cars 2, Isaac will be Lightning McQueen and Brady? A little dragon) and she was itching to get hers. She picked out an outfit (a glow in the dark fairy), and as we stood in the checkout line, I scanned the wall behind the register. Spirit sponsors a Halloween program at CHO, and they were soliciting donations. Logan was an inpatient last year at this time, so I can tell you exactly what's done with the funds collected: Each child receives a gift bag including sundries like pencils, rings, and the like, as well as a brand new costume. Last year Logan was on contact precautions and was unable to leave his room, but the child life specialist brought in a few options and he chose a doctor costume. The kids truly are thrilled to receive these gifts. Anyway, as I stood there today looking at the wall of donation cards, my eyes happened upon one that read 'In Honor of Logan'. I tell you, I almost started crying right then and there. I had to work to hold it together as I stepped forward to pay. Of course, there's no guarantee that it's MY Logan, but I'm pretty darn confident that it is; after all, it's our hometown. So if that was you, I thank you from the bottom of my heart. I know it's just a name on a card, but it meant a lot. And your donation to the kids means much, much more than you could ever imagine.

Thank you for being a part of Logan's team. Have a blessed Sunday. Mark 11:22!

Saturday, October 8, 2011

How to Break My Heart

I probably shouldn't provide such a detailed instruction manual for this kind of thing, but it's relevant, and if it saves someone else from some heartache in the future, well, it's worth the risk.

We had a pretty nice day: Our annual pilgrimage to Half Moon Bay to Pastorino's Pumpkin Farm, then on to San Francisco to watch the Blue Angels fly from Adam's dad's office. There was an acceptable amount of fussing and complaining throughout the day, mostly from Logan. We expect it, given the heavy dose of Decadron coupled with his age.

We wound up at Sweet Tomatoes, per Logan's request, at dinner time. It was something of a stressful meal to start with; tons of people in line, lots of impatience. But eventually we settled in and ate.

Once we'd finished, Logan insisted that he was too tired to carry his cup, so Adam said fine, just leave it behind, and headed for the exit with Isaac and Brady in tow. Logan relented and picked up his own cup, crying as he left. As the guy and boy at the table behind us watched him go, they smiled. Stifled laughter, really. I could see them scrutinizing his puffy cheeks and his tearful eyes. And I got angry. I stopped just long enough to tell them that he's a cancer survivor and that they should hold their laughter until they'd walked a mile in his shoes.

They didn't really care. The boy looked shocked that I'd noticed or said anything. The dad? He blew me off by offering up a snide 'okay' and avoiding eye contact.

After I'd stormed out, the sadness set in. And my heart broke for my son for the thousandth time.

I can't impress upon you all the importance of avoiding that kind of judgment of others. You never know what someone else has been through. In that moment, I wanted SO badly to put the kid into Logan's body for just a day to show them how incredibly hard his life is; how hard it is to just be some days. But that can't happen. So I have to get over it, just like I had to do the other 999 times similar things have happened.

Friday, October 7, 2011

A Step Toward Normalcy

Logan took another big step toward normalcy today when he had his chemo port removed.

No, you didn't miss any big announcement. It all actually came about last night when I realized that I'd made a near-colossal mistake by forgetting to flush his lines a few mornings this week. In the excitement of no longer using the TPN (IV nutrition bag) overnight, it was somehow lost on me that I still needed to clean out his tubes each day. Adam finally figured out my error last night when he happened to see Logan's line and realized that it was full of dark-colored, likely clotted blood.

He tried to draw out the blood using empty syringes, which didn't work particularly well, and then called CHO to ask what we should do. I relaxed a little when the on-call doctor said there was no reason to rush in; it could wait for this morning. But I still felt like a complete idiot for forgetting such basic care. Yes, I have a lot to do. Yes, things are hectic, especially lately with all of the illness swirling around our home. But there's really no good excuse for that kind of error. It was merely me being careless and forgetful, two things that the mom of a cancer patient can't really be. But the important thing is that ultimately, my mistake didn't harm him.

Anyway, onto this morning. Logan went to preschool as scheduled. He'd have been horribly disappointed to miss it because today was the day they were making mini pizzas, and he'd already decided that he'd use cheese and olives. (P is the letter of the week.) He was, however, NPO (no food or drink) while there, but fortunately he understands what it means and there were no arguments. Adam picked him up a little before 11 and headed to CHO, where Philippa attempted to TPA his line (which means she injected some clot-busting medication). Though we've been doing reasonably well with eating, Dr. T still wanted to try to keep the port in a bit longer. She was able to clear one line, and then the other, but near the end of the process, they noticed that the end of the lumen was leaking. They made the call to remove the port at that point. I wasn't there and don't really know the specifics, but I do know that he went in at about 4, was put under, came out not long afterward, was briefly monitored, and then came home. He has a bandage over the site that can be removed on Sunday.

There's an insane amount of emotion behind these words. It's probably not as palpable as it's been at times in the past, but it's definitely there.

Logan doesn't have a chemo port. He is, for all intents and purposes, a normal kid right now. He can do everything that kids who haven't been afflicted by cancer can do. He doesn't have to worry about one of his siblings inadvertently pulling out his line. He can wear a trundle bundle to bed. He doesn't need clamps or flushes or heparin. It's been more than a year since I've been able to say all of those things. He's not going to like being stuck every Monday for blood draws, but gone are the worries over blood infections and contamination. Just like that. Poof.

My fervent prayer tonight is that the port is gone for good; that he won't ever need another one; that health is here to stay. So please pray for that health, for continued and lasting healing, for a good appetite, for good spirits. For Mark 11:22. For the Holy Spirit to fall afresh on us every single day. For hope, faith, belief and perseverance.

Otherwise, we're trucking along here. It's really been a very good week for Logan. His attitude has, for the most part, been excellent. Yesterday he laughed so hard at the dinner table that I thought he might pass out. A few days ago Adam turned on the DVD of this year's dance recital and Logan took the bait, rising to his feet to prance along to several of his favorite routines. He's been mostly sedentary since he started having issues with his spine, so it was wonderful to see him on the go again.

Anyway, I'm worn out. It's been a long day, and I think my emotions may get the best of me soon, if only for a few minutes. Have a blessed weekend.

Sunday, October 2, 2011

The Sick Stick

There's (finally) a chill in the air, the leaves are changing color (in some areas) and school is in full swing. All of that pretty much means one thing: We're ripe for a good beating with the sick stick.

And thus far, Abby and Brady have been hit. The rest of us are hanging in, but it's been a dicey week. I've been to the pediatricians office a whopping 4 times over the past 9 days, once for Abby (strep), twice for Brady (ear infection and an ear check brought on by a bad reaction to his antibiotic) and once for Logan (ear check). And I could well be taking Abby in yet again tomorrow, as she spiked a fever of 102 this afternoon after church and then threw up a few hours later. And I know Brady still isn't feeling well. Though his ear check showed that his infection had cleared up as of yesterday, he's been out of it for the past few days --tired, clingy, cranky, sleeping very poorly.

So anyway, please pray for our collective health and healing and for protection from the ailments that are floating about in our environment. Pray particularly for good quality naps for Brady, who's been getting by on a single 20 minute nap per day for the past week or so, and for a wall of protection around us. Thank you.

Onto Mr. Logan. He had a good week, all in all. Today was probably the most cheerful one he's had in a very long time. He went to Sunday School and for the most part, avoided fighting with his siblings. While Adam tried to get Brady to nap this afternoon, he created his own matching game, which we played later in the day. And he's eaten reasonably well, too, which is huge since the team decided that he'd have his last TPN (overnight IV nutrition bag) on Friday night. We have to carefully monitor what he eats and his nutrients need to keep themselves regulated, but it's another step toward having his chemo port removed. So please pray that his weight will remain stable, his nutrient and mineral levels will stay where they need to be and that his appetite will stay healthy.

In other news, I had my first co-op day in his preschool class on Friday morning. I can't think of the perfect term to describe it, so I'll go with a collection of them instead: Eye-opening, reassuring, and honestly, emotionally challenging. He spent most of his time sitting by himself working on creating tiny, colorful flowers, which he painstakingly drew and then cut out. He didn't interact much with the other kids, though he was never mean or unkind; really just a little withdrawn. It hurt a little to see him hanging back from the others. It's fine to be shy, of course; I was shy when I was his age and I'm not in the camp that thinks there's something wrong with someone who doesn't want to be part of the group. But I know how he was; I know how social and smiley and giggly he used to be. So it was a little painful to see how the past year had changed him.

And it was hard for another reason that took me by surprise. It was hard to be there surrounded by healthy kids his age. It was hard to see them running and climbing and jumping and laughing and being social. It grieved my soul when I realized just how much cancer has taken away from my son. I was envious of the beautiful heads of hair, the shining eyes, the cheeks that haven't been inflated and distorted by the effects of steroids. It all just seemed so unfair as the observations washed over me.

But then I realized that not a single one of those kids gave Logan even a second glance. And why would they? He is, after all, just one of them. And I was grateful for their sweet naivete.

So yeah, it was something of a mixed bag of an experience. He really liked having me there; he said the dinner prayer Friday night and thanked God that mommy had come to preschool with him. Always grateful for those moments, even when they're accompanied by twinges of discomfort or pain, if only because I'm living them and not merely longing for them as I was doing 365 days ago.

Once again, I've dumped a rather disjointed entry here, but I hope the essence of what I'm saying is clear enough. Thank you for being a part of Logan's team. Have a blessed week. Mark 11:22!