Tuesday, November 30, 2010
The certainty: Baby boy will be born at some point before Christmas, ushering in a permanent change in our family structure along with a whole new set of challenges, and of course, joys. The uncertainties are practically as plentiful as the stars in the sky. How will I make it on no sleep when Abby needs to get to school each day and Isaac needs attention? Will my house ever be presentable? How do we coordinate new kinds of help? Will I ever lose the gosh-awful amount of weight I've gained? So many questions, so many unknowns. And so many of them hinge on this upcoming round of chemo: Will this next round be more like cycles 1 and 3, or will it more closely resemble the train wreck that was cycle 2?
Logan will begin cycle 4 tomorrow, pending good blood work (which according to yesterday's draw, he already has in his court). I took him to CHO this morning for his first dose of Synagis, the RSV vaccine; despite the nurse's valiant efforts (which included a hand-knit hat, a shirt and a stack of band-aids), he was not amused by the double-barrel of injections, but fortunately the tears ended quickly and the mood rebounded. He spent the afternoon with grandma while I headed back home to take over Isaac duty and pick up Abby from school. This evening, he chose a trip to Red Tractor for dinner and munched on his fave of late, mac and cheese.
His love of junk food has done excellent things for his weight, per this morning: He was up to 16.2 kg! When he came home back on the 10th, his weight was closer to 14 kg, so we're extremely pleased and thankful that we've managed to help him tank up a bit during his nearly three weeks with us. He's still thin, but I no longer involuntarily cringe when I see his tiny legs, he has significantly more strength (and has been dancing around the house and singing as a result), and he is, if you can look beyond the lack of hair, paler than usual skintone and off-kilter eye, looking quite well. I don't know if I'd ever specifically mentioned my quiet prayer with regard to his weight, but it was that he'd be back up to 16 kg by the start of cycle 4. Isn't that the coolest? I never thought it would actually come to pass but I'm so awed and grateful that it did. To jump from 14 kg to 16 kg in three weeks just seems so amazing; it is, after all, almost 4.5 pounds. Praises to God for those things.
If I'm being honest -- and don't worry, because I am all the time here! -- I'll admit that I'm a little agitated about what's to come in December. We've reached something of a crescendo, the point where the rubber will really meet the road. Up until now, baby #4's arrival has been something of an amorphous concept; he'll come eventually, I'd think, but now 'eventually' is pretty much NOW. I'm super excited to see how God helps us to get through all of this, and how He's going to show Himself in new and amazing ways. He's going to have to show up in incredible and visible ways because there's no way we'd make it if He didn't.
I also admit that for some reason, I'm extra nervous over cycle 4. I don't really know why; maybe it's just worries over whether or not Logan will be home for Christmas, whether he'll get to start his treatment in the immunocompromised ward, where he did well, versus the regular pediatric unit where near-disaster struck, whether or not he'll get to be home when the baby comes home from the hospital, when the baby will show up, and on and on. It's not as if there aren't many things to be worried over. So with all of that said, here's my laundry list of prayer requests to start off your final month of 2010:
- For a smooth cycle 4, with early clearing of methotrexate, no mucusitis and minimal side effects. We'd really like him home with us for Christmas, and for as much time leading up to the 25th as possible. Logan loves the holiday season like no one else in our family; as we drove along in the darkness tonight, he oohed and aahed over the Christmas lights on display, and it made my heart sing to hear so much wonder in his chirpy little voice.
- For a smooth delivery for baby 4, hopefully at a time when Logan is NOT at CHO so Adam and I won't have to stress over Adam potentially missing the birth. My last labor was 4 hours long from start to finish so if I go into labor at the wrong time, he could be on the freeway while I'm giving birth!
- For total eradication of those tumors and an earlier-than-anticipated remission. This feels like a big one and I feel bold for asking for it. But what's the point of praying if you can't be bold and ask for what your heart wants? I'm asking for big things lately. Medically speaking, it takes 5 cycles of regular Headstart chemo plus a transplant cycle -- which is essentially a year of meds crammed into a single round -- to push most kids into remission. But I want that MRI on January 4th to show something amazing. Yes, he'll still have to finish the entire course of treatment, but to go into the final cycles with little to no signs of cancer would be amazing. Utterly amazing. And I still feel like God is promising amazing things here. In fact, when I was awake at 5 this morning and felt the tears coming, I heard Him tell me again to keep holding on; that amazing things are still ahead. And I believe it's true. Please believe that along with me.
- For his health and his spirit. Despite the fears that plagued me as he languished through cycle 2, Logan has been Logan for the past week or so. Vintage, silly, sweet, loving, crazy-dancing and joyfully singing Logan. Please pray that he will maintain that sweetness despite all he's going through and will continue to experience over the course of the next few months.
I think that's enough for now, but rest assured: I'll have more requests soon! Please do pray extra hard over cycle 4: For effectiveness, minimal side effects, no fevers, and a brief stay at CHO. Thank you so much.
Good night, and blessings to you all.
Monday, November 29, 2010
The Parable of the Lost Sheep was clearly intended to be an important one, as more than one Gospel relays the tale told by Jesus. In a nutshell, a shepherd misplaces a single sheep from his flock, and spends countless hours searching for that one fluffly little absentee until his efforts are rewarded.
Typically, that tale is used to convey God's love for His children; the notion that He'll search high and low for one single lost soul, never ceasing until He's able to welcome him or her back into His flock. And I agree: That's what it means.
However, and forgive me for taking liberties with the scriptures, I'd also argue that for me and for others in my position, it takes on an all new and important meaning.
I've had more than a few undoubtedly well-meaning folks say to me something along these lines. Some of you will find the sentiment shocking and appalling, while others will quietly acquiesce that you've had similar unspoken ruminations while reading about our journey:
It's such a shame that all of this is happening to your family. But remember that no matter what happens to Logan, you still have two beautiful children and one on the way.
I was beyond shocked the first time someone uttered those words in my direction. But I chalked it up to said person simply not knowing what to say, and after my heart wept a little, I let it go. When I heard similiar words a second time, I decided I needed to write an entry like this. The third time, which came very recently, I knew I had to share my thoughts, and sooner than later.
To put it simply, Logan is my little lost sheep. He's not a disposable object that can be replaced, or whose absence could ever be mitigated by the presence of another. In fact, he's a brighter light in this dark world than many, many others combined. He's well-worth being sought after, saved and redeemed.
So as his mother, I'm going to make sure that I keep my prayer warrior troops rallied, with the hope and faith that at the end of this journey, Logan will be 'found', restored to complete health, and returned to our little family 'flock'.
Sunday, November 28, 2010
I left off with my brief recap of our disappointing-turned-frustrating-turned redeemed (yes, I can call it that!) Thanksgiving Day. Although the way it began broke my heart, a few days removed, I can see it for what it was: A heavenly kick in the pants! I'd been stressing over why we were receiving the gift of holiday-time with Logan at home rather than just accepting the time for what it was and is: A big, unexpected blessing. So the way I see it, what happened was God saying to me 'look Sherry, I'm giving you this great thing you never expected. If you don't want it, then fine, I'll take it away'. Now, a few days later, I can look up, respond with a hearty thank you and a message received! and pray for more miraculous things.
Anyway, I was truly impressed with how quickly Logan recovered from the line placement. He had a single shot of morphine after surgery, but otherwise, has been a-okay. Friday was a cool but pretty day, so we ventured out to the Christmas tree lot by the fairgrounds where we've always gotten our trees in order to pick one out. Logan was super excited about going, so we had a little troop of bell-ringing, singing short people in the back of the van as we made the trek. Given that we were just a day removed from turkey and cranberry sauce, the lot was pretty empty, giving them lots of room to run around and play. The pre-big C diagnosis me would've had them on a tight leash, forbade running, stifled laughter and shrieking to a dull roar... but not now. All three acted a little crazy, and I let them because they're kids. And they were having fun, and there was no one else there to be bothered by their chicanery anyway. And it felt freeing.
Saturday we decorated the tree with a large handful of my massive ornament collection; another activity that was very much on Logan's 'wanna do' radar. There was plenty of silliness and goofing off; so much, in fact, that we repeatedly had to remind all three kids to be careful of Logan's lines, to slow down, to take it easy. Today, Sunday, involved Adam taking the other two kids to church while I hung out at home with Logan. We didn't do anything special, but it was just so nice to sit with him and be for a little while. I pulled out the video camera and did a little 'interview', which was fun. Then we headed over to Arby's for lunch, since that's what he said he wanted, and Adam met us there with Abby and Isaac shortly thereafter so I could head off to a baby shower put on for me and another lovely gal by the Centerpointe ladies (thank you!).
Daily recaps finished, he really has been doing remarkably well, and for that, I sing praises. Medically, he shouldn't be doing as well as he's doing. But I'm telling you that God has intervened in a mighty way, and as a result, Logan is almost vintage-Logan normal. He's goofy, he's silly, he's sweet, he expresses affection more freely than anyone else I know, and he has actual energy. Less than pre-diagnosis, but not much less. He is, naturally, weak and gets tired more easily, but it doesn't hamper his spirit and his tenacity. He's an absolute portrait of resilience and strength of character. It takes my breath away every time I stop and realize that he's not wasting time feeling sorry for himself or asking the big 'why me' question that plagues adults. When he feels good, he plays and acts silly without prejudice.
So all of that beings me to the present, and to the week ahead of us. It's a week that will involve family photos tomorrow courtesy of Chrissy (thank you!), the RSV shot for Logan on Tuesday, and then pending good bloodwork, a return to CHO for cycle #4 on Wednesday. Please pray for another excellent cycle with minimal side effects that will allow him to come home again for an extended time, and of course, for complete eradication of the tumors and healing. Especially with baby boy due in just 3 1/2 weeks, we need things to go as smoothly as possible. Of course, I know that God is in control, but prayers never hurt!
I'll try to be back with more tomorrow, since I know I've been a slacker of late and I don't want to forget anything essential. Until then, bless you all and may the joy of the holiday season overcome you in a new and special way.
Thursday, November 25, 2010
Today was frustrating for several reasons. It started off well enough, with Logan calling me from the hospital at 8 to say happy Thanksgiving. He sounded cheerful, happy, and that's always good for mommy's heart. Abby, Isaac and I had a gradual start to the day which involved cereal of their choosing and the Macy's Thanksgiving Day parade. Then the parade of frustration started when Adam called at 10:30 -- 30 minutes after Logan's scheduled ER time -- to say that they'd just drawn his labs to make sure that yesterday's platelet transfusion had done the trick.
This did not put me in a great mood, and then I only let it get worse.
An hour or so later, he called back to say that Logan's hemoglobin had come back at 7, which is much too low. So they were planning to do a re-draw using a different entry point to check again, and if it came back low again, he'd have to get blood, repeat the draw, and then move on with the surgery, which meant he'd probably be there til Friday or Saturday. I was confused, mad, frustrated, everything you might imagine. And although I'm not especially proud of myself, I lost it. Tiredness, pregnancy, disappointment and a host of other crazy emotions took over and I started crying. Adam didn't know what to do with me, so he hung up, which of course made me feel even worse.
I vascillated between loading the other kids in the van and driving to CHO, but couldn't make a decision and couldn't get Adam to answer his cell, so I called my mom, which wound up being very helpful. (Thanks Mommy.) He finally called me back and apologized, and said that the second set of results came back and his HGB was actually 9.3, so almost a full point higher than yesterday's number. As a result, he'd just gone into surgery.
He called again when Logan came out of the OR at 2:30, and I then drove up with the other kids. He was aware, alert and eating a chocolate bar when we arrived. He looked pale, but otherwise okay. The oncology team wanted to let him go home, but the surgical team wanted to hold him overnight. A member of the surgeon's team came in at one point and was kind of a jerk to me, to be honest: He asked how much we wanted him to be able to go home today, and I was a little taken aback before I pointed out that he has a bad form of cancer and we like to have all of the holidays we can get. He replied rather curtly that the potential bleeding issue they were worried over was more potentially dangerous than the tumor. I was not amused. The oncology fellow, Anna (who really likes Logan), thought he was overreacting, and talked with the on call doc, who pressed the lead surgeon to just release him. Inevitably, that's what wound up happening, but the conversation with the surgical team member really left a bad taste in my mouth. I understand that it's impossible to understand where I'm coming from unless you've been in my shoes, but the jerk attitude doesn't help anyone.
I drove Abby and Isaac to Adam's Aunt and Uncle's house for a late dinner at about 5:30, and Adam and Logan were shortly behind us. He really enjoyed the turkey in particular and ate reasonably well, though he was also clearly very tired.
We got home a little while ago. I'm utterly exhausted. We have to watch Logan's new line very carefully, and may have to take him to the onc clinic in the morning to have it checked, but at least we're all home. Rather than placing it in the same artery, they wound up inserting it in an artery on the opposite side of his chest, so now he'll have matching scars.
My poor little pin cushion. But he really is a champion. When I was putting him to bed tonight, he said 'I think Angela's a pretty good nurse'. I was amused -- she was his nurse this morning and had been his nurse several times in the PICU back in August, but we hadn't seen her in quite a while. But she's always liked him. Anyway, I asked why, and he said 'it's because I like her hair'. I asked what he liked about it, and he said 'it comes down in a line (sideswept bangs) and it does a circle thing at the end (curls).' He's so funny. He has surgery and is back macking on the ladies a few hours later.
But anyway, thank you for your prayers for today and for the ones of the past and for those to come. They're the most important gift you could ever give our family.
Wednesday, November 24, 2010
I don't know what it all means for our Thanksgiving plans (a dinner at 3 PM), but I guess there's nothing I can do about it so there's no point in dwelling.
I'm just so annoyed and mad and frustrated. I fault myself for not intervening more quickly when I saw the fight starting to break out. I felt awful this morning and early afternoon and was trying to just relax; it never occurred to me that this kind of thing would happen -- especially not the day before Thanksgiving. (Though given our history, I'm not sure why I didn't expect some sort of challenge to pop up about now.)
So that's where we are for now.
I'm so disappointed I could cry, but I can't. It would just make Abby feel worse.
Given his increase in WBC count, we decided that today was the day to take the big trip to see Santa Claus. Logan was unusually nervous about the prospect of seeing the big guy, but wound up being a-okay. Our photo definitely isn't the best one we've ever had, but it's ours and it exists and that's what matters.
The most poignant moment of the experience -- the one that made my eyes sting with tears -- came after Abby, Logan and Isaac had dismounted Santa's lap and he stopped them to ask what they'd like for Christmas. Abby replied first, asking for a Tinkerbell House, but as she spoke it was Logan's expression that stopped me in my tracks: He had such a big smile, such a wide-eyed expression of wonder on his face that it was almost too much. Almost painful, because our future is so uncertain and I was reminded of that fact in that single moment of beautifully expressed childhood innocence.
I immediately wished we'd had the video camera rolling, but we didn't, and then it was over, the moment had passed, and we were paying for our photo and heading out before the throng of holiday shoppers had a chance to press in on our little party. Surreal.
But I know one thing for sure: I'll never forget the look on his face. Even if he's 30 years old and taking his own child to see Santa, I'll still see that expression when I look at him.
Tuesday, November 23, 2010
I had a great OB check this morning, which revealed that I'm making progress -- though not too much progress for just shy of 36 weeks -- toward delivery.
Logan's audiology test at CHO showed no hearing loss through cycle three of chemo, and his WBC count is up to 2.6 or 2.8 (Adam couldn't remember the precise figure, but either way, it's good news). His hemoglobin sits at 8.4, which is apparently lower than Sunday's number (which is weird since we were told 8.4 on Sunday as well though apparently it was actually 8.8, but eh, it's okay), so we'll check it again with another draw tomorrow morning. The sole bummer of the stat set were platelets, which rest at either 26 or 28 (again, Adam wasn't sure), which meant that he was unable to get an RSV immunization: The minimum platelet count to proceed with that is 30, so he just missed the mark. Instead, he'll report to CHO next Tuesday for the shot, and then be readmitted to start cycle #4 on Wednesday, just one day late. Philippa told us to give him one more shot of GCSF to push his numbers as high as possible for the time being, and then we can stop with those, too. Logan will be relieved, since he hates his nightly injections. They're pretty torturous for us as well, but, well, he's 4, so there's lots of screaming and crying and agonizing beforehand.
Otherwise, there's been plenty of good cheer (and noise) around our house. Logan actually has more energy and is in better spirits than he has been since before we knew about the tumor. Sure, he absolutely gets tired and cranky and takes naps, which he hasn't done routinely for two years, but he also seems genuinely happy at times.
So, I'm choosing to think of this third cycle as one of the 'amazing' things God promised to me months ago. And I'm also choosing to believe that it's just the tip of the iceberg, and that more amazing things are in store. I could merely protect myself in a cloak of cynicism -- which, ironically, is my usual modus operandi -- but it doesn't feel like the right thing to do. I don't think this is a bounceback 'extraordinary' cycle designed to make up for cycle 2's disastrousness, rather a sign that All Things Are Possible.
There, I've said it. It's out there. I can't say that my emotional pendulum is truly swinging back in a negative direction, but I can say that I'm sad, bummed out and frustrated. Fortunately for me, I suspect that this is just part of the natural progression for moms in my position; moms doing all they can do to rally support for their critically ill children and feeling buried, virtually suffocated under the weight of that responsibility.
I'm sad because although I'm thankful that Logan is doing as well as he is, he's still very ill. And he's still very much not himself 80 some percent of the time. He's tired, weak, cranky, mercurial. All things that are normal for kids on his treatment protocol; after all, the drugs absolutely destroy the bone marrow and physical resiliency in addition to causing a host of awful side effects that no 4-year old child should ever have to face.
I just miss my sunshine and I hate the evil that somehow took root in him and precipitated this disaster in the first place.
So yes. My heart hurts and I'm sad.
But tomorrow is another day.
Monday, November 22, 2010
Saturday, November 20, 2010
Friday, November 19, 2010
Thursday, November 18, 2010
I’m okay, It’ll be alright again, I’m okay (okay) It’ll be alright again, I’m okay
Tuesday, November 16, 2010
The Impossible / Joe Nichols
Unsinkable ships sink, unbreakable walls break
Sometimes the things you think would never happen
Happen just like that, Unbendable steel bends
If the fury of the wind is unstoppable
I've learned to never underestimate the impossible.
I'm slowly learning to live by that last line: To not underestimate 'the impossible', because after all, with God, ALL things are possible.
G'night, all. Thank you for your prayers and your ears.
Hold the phone, say what, are you crazy?!
I know. But it's true. I can't lie and say that I'm thankful that Logan is as sick as he is. I also can't pretend that I'm thrilled to be ready to pop out baby #4 while staring down the barrel of an uncertain and decidedly scary future. But even in the face of those things and many, many more, I also can't lie and say that I don't have anything for which to be thankful.
I'm thankful for our community and for the scores of people who have stepped up to offer help of all sorts. I'm thankful that Logan knocked it out of the park during chemo cycle #1 and was able to get started with cycle #2 in an expeditious manner. I'm even thankful for the delay after cycle #2, because it means we'll have a good shot at having him home for Thanksgiving and Christmas, if all goes well. That wasn't the case according to the 'if all things go totally perfectly schedule'. Sure, losing that week is scary and upsetting, but it was immeasurably wonderful to have him here unexpectedly for Halloween, so I know it'd be utterly amazing if he were able to be here for other bigger holidays as well. I'm thankful that cycle #3 has gone better than #2 so far, and that he's exceeded expectations with regard to staying well enough to be home. He had his check-up and Vincristine this morning, and came back home just as we'd hoped.
At this precise moment, as I sit on the couch next to Logan, I'm thankful that he's awake enough to enjoy Zaboomafoo on Sprout, that he's eating his second Oreo cookie, and that he ate 1/3 of a Costco hot dog and some lemonade for lunch.
But more than all of that, I'm thankful that we're being given a rare chance -- a 1 in 3 million-style rare chance -- to see God moving first-hand in an amazing way. Sure, it still stinks. I wish it wasn't me and my son and my family. But at the same time, I absolutely cannot wait to see what God will do tomorrow to blow my mind. He's already given us awesome MRI results, a sudden and, medically, nearly inexplicable recovery from the infection that had his lungs so compressed by displaced fluid that he could hardly breathe. And now, he's given us a nice and unexpected break from the hospital.
I continue to believe and proclaim that Jesus saves, and for that I'm thankful. And I'm thankful that this year, I have an all-new reason to cling to that truth and to believe. Just as Jesus saved Jairus' daughter, the paralytic and scores of others during His time on this earth, he can also -- and I believe wants to -- save my child. Logan is a light in this world, and I hope that if you've not met him, that you will some day.
So yeah, it feels a little ironic to feel gratitude for any of this. But it's my call to share my feelings and my beliefs as we travel this path, so there you go. Bless you all, and as Thanksgiving approaches, remember to be thankful -- for the blessings and the challenges in your own lives.
Monday, November 15, 2010
Molly and Philippa both continued to be impressed by his progress so far; when Logan returns for his outpatient Vincristine tomorrow, he'll break Molly's record for Headstart kids' time at home mid-cycle. Granted there aren't many kids on the Headstart protocol, but still, it's worth noting that she's never seen a kid manage to stay out of the hospital long enough to need to return for their chemo booster. Additionally, Philippa told Adam that she would've bet money on Logan being admitted again sometime Saturday or Sunday. So positive things are happening. Praise, praise God for that.
Despite all of that, I still feel decidedly squirrelly. I mean, of course I do: My little sweetie has a dangerous form of cancer. It's natural that I feel a little nervous now and then, right? I guess you could just say that I'm having trouble fully accepting and not questioning the positive developments we've seen here. I know they're blessings from God; it's a blessing to have him home. It's a blessing to not have to trek back and forth to Oakland every single day while 34 1/2 weeks pregnant. It's a blessing to think that we may get to have him home for both Thanksgiving and Christmas this year. But at the same time, it's hard to not let the doubt creep in: Why are things going so nicely? I'd like to just accept the blessings freely and without worry and without creating implications within them that probably aren't even there.
It's not as if we're not deserving of a little good news; the past 13 weeks have been largely a string of hellaciously bad things, the unfolding of a horror story. So I know I should just relax and enjoy. But a half glass empty girl like me has to work extra hard when it comes to things like that, so I'm doing the best I can to shut out the negative voices, so to speak -- like the one that whispers 'look at how wonky his eye looks again' -- and to focus on the positives.
I should take a lesson from Logan and live in the moment.
Thank you all so much for your prayers and for sharing our journey with your prayer warrior friends. I believe that prayer can change everything. Blessings to you all!
Sunday, November 14, 2010
Saturday, November 13, 2010
Friday, November 12, 2010
Thursday, November 11, 2010
If you're new to my blog and our story, I'd like to extend a warm welcome to you and to thank you from the bottom of my heart for every single prayer that you say on behalf of Logan, myself and our family. As you read the entries past, be aware that I'm brutally honest at times: Although eloquence of the written word is a gift that I possess, at times, particularly when things seem outlandishly challenging and overwhelmingly hard to handle, my emotions get the best of me. But I assure you that it's all real: If the Good Lord can use me to reach or bring comfort to just one person, I'll be pleased to know that I've served a good purpose through my pain and suffering.
In case it escaped notice, my FB status update a little while ago read as follows:
and the verdict is... transfusion went fine, NO fever. They'll be heading home soon! Phew. Thanks for praying! Now just to destroy that tumor and its buddies...
Woo, thank God for that! Adam and Logan got back home at around 8:30 this evening and while Adam took charge of putting Abby and Isaac to bed, I made Logan's dinner of choice: Kraft macaroni and cheese. (He apparently rejected all other offered foods while they were out at the hospital.) I prepared it in, er, what I'll call 'chemo weight loss friendly fashion', using a full stick of butter, a tablespoon of heavy cream and 1/4 cup whole milk. (For reference, the usual recipe -- which is already calorie-laden in a gross, gross way -- calls for 4 tablespoons of butter and 1/4 cup 2% milk. So just a slight variation from the norm.) I made up a little bowl and added a capsule of potassium, since his levels have been low and he refuses to eat or drink anything at all that contains 'those white fings', as he calls them. We figured it would be a good idea to try to melt them. Logan ate about half of the bowl before he complained that it tasted 'salty'. I'm grateful that he probably got a good dose of it, but wish he'd have finished. Oh well: Some is better than none at all.
Post macaroni, he requested the last slice of Abby's birthday cake. After he'd polished it off, he asked for some of the homemade ice cream Adam was eating. Score! It was, of course, made with heavy cream and I wouldn't touch it with a ten foot pole, but he needs those calories so praise God for his dessert gluttony tonight! And yes, I can add that last phrase to my ever-growing 'I never thought I'd say something like that about my child' list.
I don't know what tomorrow will bring -- but honestly, who does?? -- but I'm grateful for today and tonight. And I'm grateful for everyone who prays for us and who intercedes on Logan's behalf. I believe in the healing power of prayer, and I'm so excited by what I've seen. I want to see more and more and more, and I pray that I get that gift.
Despite the pain and the frustration and the pure nightmarish nature of our situation, I'm also finding a peace that I've never really felt before (at times, anyway. I'm still human. I still get upset and lose hope). I enjoy my prayer time more than ever, and I enjoy that I feel like I hear from God. For example, this morning was challenging, with Logan rejecting medicine and then vomiting after we'd made him take it. I was frustrated. I went upstairs, laid on my bed and prayed for some peace. I questioned God for the upteenth time, expressed anger over Logan's suffering, and said I didn't understand why any of it was happening. And then I heard it, quietly: Because I'm reaching people. And I felt peace. Not contentment, but peace. A vague sense of acceptance.
If He's reaching you via all of this, I'm grateful. And please keep praying!
I've officially finished moving all of my posts to my new blog. You can find it at prayersforlogan.blogspot.com. Please feel free to follow me there and to invite your friends and fellow prayer warriors to do the same. Thank you!
Logan came home yesterday afternoon... and is getting ready to head back to the hospital again tonight. His bloodwork from the morning showed his platelets to be at 7 and his WBC at 0, so if nothing else, he needs to be re-admitted to get a transfusion of the former. We'll hold our breath that he won't have a fever when they take his temp before getting the platelets going, but I'm trying to be realistic: I took it a little while ago and it registered 98.6 under his arm, so 99.6. Dangerously close to the 100-degree 'sorry, you can't go home' cut-off.
It's hard to not feel conflicted over all of this. One one hand, I'm glad that he had at least a day at home during this part of the treatment process. It's something we didn't manage to do during cycles 1 and 2. On the other, I'm decidedly bitter that we're in the position to be forced to view ONE day as a blessing in the first place. What kind of life is that? Lousy. Frustrating. Arduous. And this 34-weeks pregnant mama isn't amused.
So anyway, we'll see what happens. Adam is going to take him in as soon as Philippa calls with a time. Since he's neutropenic, he needs to go to the immunocompromised ward, which takes time. No fever, he can probably come back tonight. Fever, he's checked back in for a while.
Logan's day here has been a mixed bag: He threw up a few times yesterday, and was up overnight more than once. The first time, it was because he'd had a #2 accident in his bed; the second, third (and beyond) times it was because he couldn't sleep/was hot/insert other random reason here. It's been challenging dealing with the whining and the fussing and the medicine-resistance. It's hard to remember how he used to be and to put that into context with how he is NOW. Heartbreaking.
But at least he's been here at all, and at least I didn't have to drive to Oakland. And at least I got to spend a few hours with Abby at the mall this afternoon (while Logan napped at home). So while I'm sad that we're dealing with this, I'm trying to see the pluses.
Please keep the prayers flowing. I'm tired.
Guess whose numbers were good enough this morning that he's going to be discharged in about 30 minutes? Ding ding!
It feels just amazing. A few days ago, Adam asked Molly how often kids on the Headstart Protocol go home shortly after chemo is administered. She paused and in her vaguely cynical and Molly-esque kind of way, said she'd not seen it happen one single time in the past year. There are almost always infections, fevers, low counts, a whole plethora of ill effects that keep them strapped to their hospital beds, especially by the time they reach mid-treatment. So of course, our expectations were pretty low. We figured that if he got to come home for a week just before starting cycle 4, we'd be pleased.
We know full well that he'll almost certainly spike a fever and have to be re-admitted sometime within the next 1 to 3 days (since he's prone to neutropenic fevers), but we didn't expect that he'd be well enough to be released at this stage in the game at all. And it's all the more great because Abby doesn't have school tomorrow or Friday.
Please pray that we'll be able to squeeze a few days out of this unexpected time at home, and that he'll be spared the worst of the mucusitis this go-round. We'd love to stuff him with as much high-calorie food of his choosing as possible, but if he has a bad case yet again, he won't want to eat.
Good things are happening here. Even in the midst of this horrible, awful, painful trial, I can feel it. I leave off with the lyrics of a worship song that keeps coming to mind and giving me a little tingle down my spine. I don't know if it's for me personally or for one of you, but I feel compelled to post it. Bolded section is mine:
Did you feel the mountains tremble?
Did you hear the oceans roar?
When the people rose to sing of Jesus Christ the risen one.
Did you feel the people tremble?
Did you hear the singers roar?
When the lost began to sing of Jesus Christ the saving one.
And we can see that God you're moving
A mighty river through the nations
And young and old will turn to Jesus
Fling wide you heavenly gates
Prepare the way of the risen Lord
Open up the doors and let the music play
Let the streets resound with singing
Songs that bring your hope
Songs that bring your joy
Dancers who dance upon injustice.
Do you feel the darkness tremble?
When all the saints join in one song.
And all the streams flow as one river
To wash away our brokenness.
And here we see that God you're moving.
A time of jubilee is coming
When young and old return to Jesus
Fling wide you heavenly gates.
Prepare the way of the risen Lord