It's not unusual for me to take some time to ponder the year that's passing on New Year's Eve. It's always served as a good opportunity to reflect and give thanks. So despite my mixed feelings about 2010, I'm going to take a walk down memory lane anyway.
2010 started off as a same old-same old kind of year. Abby was in afternoon kindergarten and we were acclimating to our very first year ever in the local public school system. I was involved with the Mother's Club board of directors for the third year running, this time as the Computer Data Coordinator. Logan was in preschool Tuesday and Thursday afternoons and absolutely blossoming under the care of his teacher and the friendship of his classmates. Both Abby and Logan took dance classes, with Abby mastering her Rockin' Robin routine and Logan taking on The Candy Man in his little green shirt and white pants. I spent lots of time walking to and from Abby's school; I remember Abby and Logan running ahead and laughing while I pushed the double stroller that housed Isaac. It felt like I spent a lot of time rushing back and forth, especially on Tuesdays, when I had to drop Logan at preschool, pick up Abby from kindergarten, drop her off at dance, pick Logan up from preschool and then pick her up from dance. If I knew what I know now, I bet I would never have complained about the busy-ness!
In April, Adam and I surprised even ourselves when we decided to take the kids to Disneyland for three days. And a wonderful three days they were. My brother Charlie, who lives in the Los Angeles area, joined us for day one, and we flew solo on days two and three. But there was much smiling, laughing, goofing off and acting like kids. I'm glad we opted to take the trip. It was very much out of character for us -- we rarely take trips -- but I'm grateful we went and that we have hundreds of photos to look back on. It's a bright spot in what, of course, wound up being a very dark year.
Shortly after we returned from Disneyland, we learned about the other bright spot: Brady, who was at the time known as Quattro, was on his way and due just two days before Christmas. He was unexpected, but I was quietly exuberant to be expecting number four. I'd always wanted four children, but a few months earlier had resigned myself to that not happening. It just didn't seem practical, and Adam was perfectly happy with three. Surprise, surprise.
Of course, my pregnancy also meant that I'd be ill until the baby made an appearance, but that was okay. I could deal.
My brother Bobby and his family came to visit in June, and the cousins had fun re-acquainting themselves.
The rest of the summer was something of a blur, as I spent much of it sick on the couch in my family room while the kids played. Abby and Logan really became best friends during that time, disappearing for hours on end upstairs, creating new games and laughing and enjoying one another's company. I'm both thankful and pained that they had so much time to learn to love each other so much.
Logan celebrated his fourth birthday on July 31st. He was off-kilter that day, sneaking into the garage and opening several of his presents by himself before Abby caught him making his way upstairs with an illicit package and blew the whistle. He was whiny and cranky and generally unpleasant. I'd always taken photos of my children on their birthdays; never missed a one. But I skipped Logan's birthday because he had a huge sore in the corner of his mouth that he'd picked at compulsively for days. Every time it scabbed over, he'd pick it open again. I didn't want to have a photo of him like that, so I decided to wait until later. And later never came; the appointment I'd set wound up being cancelled: It was the day he was diagnosed with the tumor. Not taking those birthday pictures is one of my biggest and most painful regrets of the year. I wish I could've seen beyond the sore and moved forward with my tradition. But I didn't.
And then August came. And the world turned irrevocably upside down. We knew something was wrong on August 15th. We knew it was a mass on August 16th. We spent our 8th wedding anniversary, August 17th, in the Pediatric Intensive Care Unit at CHO. And we waited for news, shell-shocked, as Logan underwent neurosurgery on August 20th. We cried through the pathology report a few days later when we learned what we were up against.
I battled pre-term contractions as Logan began treatment. I questioned God, bouncing wildly from faith-filled, heartfelt proclamations of His goodness to crazed doubts. We got bad news followed by good news, which was followed by bad news and then good. Logan was home for every major holiday this Fall, which was amazing and I'm so grateful for those times.
And then there's baby Brady. Even as I questioned why on earth I'd gotten pregnant when all of the drama with Logan was about to start, I hoped for the best and looked forward to his arrival. And his arrival was an amazing blessing: I was reminded once again of Logan's gentle spirit as he took to his new little brother -- how he cuddled him, kissed and rubbed his fuzzy little head, sang to him and spoke the sweetest words of comfort to him when he cried. As much as Brady is a blessing to me and to Adam, he's perhaps an even bigger blessing to my sunshine, who loves to love and loves to give of himself, even at just four years of age.
I've probably cried more tears in 2010 than in any previous year. I've also felt more acutely grateful for the blessings in my life than ever before. I wish I could go back and not take normalcy for granted. I wish I could take back every unkind word I've ever said to any of my kids. I wish I could trade places with Logan and take on the physical suffering for myself, but I know I can't do that.
Despite my fears, I'm hoping for great things in 2011. I'm praying for amazing things. I'm going to continue taking deep breaths and believing, when I can muster the faith, that Logan be well once again, and that God will touch him and heal him once and for all. He's a beautiful, wonderful part of our family of six, and we need him here with us.
Happy New Year to you. May it be better by leaps and bounds than 2010.
Friday, December 31, 2010
I'm Down. Please Stop Kicking Me.
I've found that being in this position, I've had to emotionally deflect a lot of stupid comments from a lot of well-meaning -- and truthfully, some completely clueless -- folks. I've mentioned it before in as gentle a fashion as my pained, fragile soul can muster, but a handful of experiences today coupled with my whacked out postpartum hormones have compelled me to issue another reminder. So here's some of what's behind this entry and what's in my heart.
Adam realized this morning that we were running low on laundry detergent, so we took a impromptu trip to Costco to replenish the stores. A pleasant food court lunch and a quick jaunt around the warehouse later, we were standing in the check-out line. I relished the normalcy; sucked it up like the chocolate ice cream I want but can't have right now, courtesy of Brady's dairy issues.
And then the figurative ice cream cone melted and dripped all over my shoes. What I assume was a brother/sister pair, probably about 5 and 7 years old, took an interest in Isaac and followed him as he amused himself by repeatedly rounding a pole. After a few minutes, they lost interest in his antics, and turned their bemused attentions to Logan. My little sunshine wasn't wearing a hat, so his mostly bald head and the bump and tube from his shunt were clearly visible under the taut skin. The pair went quiet for a few seconds, and then began whispering to one another -- loudly -- about how weird "that boy" looked with no hair and how messed up his eye was. I don't remember their exact words and it doesn't matter; I remember how they made me feel. Terrible. Awful. Hurt. And very thankful that Logan didn't hear a word that they'd uttered, because he doesn't deserve to be victimized by such stupidity. I wanted to turn on them. I wanted to pick on the unflattering way the boy's hair laid across his own head and on the girl's tacky ensemble. Of course I didn't. But my hackles were once again raised and my near-perfect afternoon was shot.
I think we all know that kids can be mean, especially when they don't understand why a peer looks, sounds or acts differently than what social norms dictate. As they whispered, I looked around for their parents. I couldn't figure out to whom they belonged; it's probably just as well, because I'd have given them a stern lesson on educating their children about decorum, tact and respect. And my guess is that it wouldn't have been well-received. But I've grown increasingly tired of ignorance.
Parents, if you haven't already, please talk to your children about how they treat others. It's enough to go through chemotherapy and to suffer through the side effects without having ignorant, uneducated people -- some adults included -- making you feel like less of a person when your body shows signs of wear and tear. Logan is still Logan. He's still sweet, loving, compassionate and funny. I hate -- yes, hate -- that he's being judged for looking a little unusual. I know that it's hard to talk about cancer and suffering with little ones, but it's so necessary. After all, imagine how you'd feel if it were your child being ridiculed. I won't deign to speak for others here, but I'll tell you that you'd feel more defensive and protective of your child that you can even imagine feeling. EVER.
The other experience from today is related to scripture. I've said it before, but there are some passages that simply aren't comforting right now. Unless the parent in question is a true Saint, they'd never, ever be comforting to someone facing the life-threatening illness of their child. So please think before you post something that could be painful to someone else. Even if the intention is good, it can add another layer of pain to someone else's already immensely difficult journey.
Thanks, and a Happy New Year's Eve to all of you. I hope you'll continue to pray for Logan's healing as we enter 2011.
Adam realized this morning that we were running low on laundry detergent, so we took a impromptu trip to Costco to replenish the stores. A pleasant food court lunch and a quick jaunt around the warehouse later, we were standing in the check-out line. I relished the normalcy; sucked it up like the chocolate ice cream I want but can't have right now, courtesy of Brady's dairy issues.
And then the figurative ice cream cone melted and dripped all over my shoes. What I assume was a brother/sister pair, probably about 5 and 7 years old, took an interest in Isaac and followed him as he amused himself by repeatedly rounding a pole. After a few minutes, they lost interest in his antics, and turned their bemused attentions to Logan. My little sunshine wasn't wearing a hat, so his mostly bald head and the bump and tube from his shunt were clearly visible under the taut skin. The pair went quiet for a few seconds, and then began whispering to one another -- loudly -- about how weird "that boy" looked with no hair and how messed up his eye was. I don't remember their exact words and it doesn't matter; I remember how they made me feel. Terrible. Awful. Hurt. And very thankful that Logan didn't hear a word that they'd uttered, because he doesn't deserve to be victimized by such stupidity. I wanted to turn on them. I wanted to pick on the unflattering way the boy's hair laid across his own head and on the girl's tacky ensemble. Of course I didn't. But my hackles were once again raised and my near-perfect afternoon was shot.
I think we all know that kids can be mean, especially when they don't understand why a peer looks, sounds or acts differently than what social norms dictate. As they whispered, I looked around for their parents. I couldn't figure out to whom they belonged; it's probably just as well, because I'd have given them a stern lesson on educating their children about decorum, tact and respect. And my guess is that it wouldn't have been well-received. But I've grown increasingly tired of ignorance.
Parents, if you haven't already, please talk to your children about how they treat others. It's enough to go through chemotherapy and to suffer through the side effects without having ignorant, uneducated people -- some adults included -- making you feel like less of a person when your body shows signs of wear and tear. Logan is still Logan. He's still sweet, loving, compassionate and funny. I hate -- yes, hate -- that he's being judged for looking a little unusual. I know that it's hard to talk about cancer and suffering with little ones, but it's so necessary. After all, imagine how you'd feel if it were your child being ridiculed. I won't deign to speak for others here, but I'll tell you that you'd feel more defensive and protective of your child that you can even imagine feeling. EVER.
The other experience from today is related to scripture. I've said it before, but there are some passages that simply aren't comforting right now. Unless the parent in question is a true Saint, they'd never, ever be comforting to someone facing the life-threatening illness of their child. So please think before you post something that could be painful to someone else. Even if the intention is good, it can add another layer of pain to someone else's already immensely difficult journey.
Thanks, and a Happy New Year's Eve to all of you. I hope you'll continue to pray for Logan's healing as we enter 2011.
Thursday, December 30, 2010
Angry
Today was my first angry day in quite some time. Between yesterday's less than great MRI news and being two weeks postpartum, I'm having a hard time coping with the mess that's my life at the moment. I'm struggling with faith, and have reverted to a place of feeling hopeless about Logan. I don't have much confidence that he'll be healed and my heart is broken. The disappointment is overwhelming; I had so much hope that we'd see great results yesterday, and I don't know how to effectively process the reality. I'm afraid to hope for good news again because I hate the idea of feeling this kind of acute disappointment; it's easier to just expect the worst and then deal with it when it happens. I'm sick and tired of being the 'rubber' in the old 'I'm rubber and you're glue' schtick.
So that's me.
Fortunately for Logan, he had a nice day. He ran around playing with Abby, and the two of them big leagued poor Isaac, just like they did in the pre-cancer days. There was a lot of laughing and having fun and being a normal kid.
But I couldn't enjoy it because I'm so emotionally stifled by fear. The very fear that just yesterday I vowed to avoid feeling crept into my heart and rooted itself there. I want more than anything else in this world to have my faith in healing restored, but I'm so crushed and so disappointed that I'm scared to hope for good news ever again.
Pray as you like. I'm just in a low place. I wish I could be someone else for a while, or that I could have a fast forward button to get through the next several months. And yes, I know the Bible's words on the subject. Right now, they're just not comforting.
So that's me.
Fortunately for Logan, he had a nice day. He ran around playing with Abby, and the two of them big leagued poor Isaac, just like they did in the pre-cancer days. There was a lot of laughing and having fun and being a normal kid.
But I couldn't enjoy it because I'm so emotionally stifled by fear. The very fear that just yesterday I vowed to avoid feeling crept into my heart and rooted itself there. I want more than anything else in this world to have my faith in healing restored, but I'm so crushed and so disappointed that I'm scared to hope for good news ever again.
Pray as you like. I'm just in a low place. I wish I could be someone else for a while, or that I could have a fast forward button to get through the next several months. And yes, I know the Bible's words on the subject. Right now, they're just not comforting.
Wednesday, December 29, 2010
Pass it Along -- PLEASE!
As much as I'm inclined to just hide in a corner and eat my own hair, I can't. I can't let disappointment crush me, especially since hope is still very much alive. The bastard tumor may not be smaller, but the contrast looks better (measure of aggressiveness), it's NOT bigger, and it hasn't spread to his spinal column. As several of you have pointed out to me (and thank you for that), those are three big things to be thankful for in a very real way.
So what if it's not smaller? It'll just make for a more amazing, God-stamped story down the road, right? It's easy to write that and I want to believe it, but when I think it, I get that feeling of having swallowed too much air: Like it's SO much to hope for that I can hardly fathom it coming to pass.
Logan is still a fighter. At this moment, he's acting like his usual, pre awareness-of-cancer self. He's sitting on the couch being silly with his sister. The oncologist on service this week, Dr. Golden, said we could go ahead and disconnect his Vanco (antibiotic pump), so he's not hooked up to anything at the moment. Aside from a somewhat wonky eye, the clip that attaches the tubes from his chemo port to his shirt and a general lack of hair, he's very normal.
Cancer be damned, he's doing well. That has to be worth something, even as I battle my own fears.
I'm scared to pieces over this. It's sort of like the feeling I had when I first learned there was a tumor. Then it got better, and we got the pathology report and the feeling came back again. Then he started treatment and the first two rounds led to tumor shrinkage, and it got better. Then this disappointing MRI... it comes in waves, it seems. I'm trying to remain mindful of that.
Even Adam is scared. I can see it in his eyes, even if he doesn't come out and say it. He's a private person. He also doesn't relish the notion of upsetting me, so he generally keeps his emotions in check and to himself. But I know he's worried and disappointed just like outwardly-emotionally-expressive-and-volatile me. And for him to be worried, you know it's serious, because he just doesn't waste energy worrying over much.
Before I forget to note it, we won't hear back from the surgeon until Monday, which is disappointing, but apparently he's on vacation and his office staff doesn't know where he went. So please pray that things will stay static (or get better!) between now and then. If he decides it's operable, he'll have surgery on my birthday. I've long-anticipated this as my 'lucky' birthday, since I like 1s and 3s and I'll be 33 on 1/11/11. My prayer is that if surgery IS part of that day, that he'll be able to get it all. Otherwise, we're likely looking at a cycle 5 starting early next week.
**************
So why am I writing again? What does the subject line mean? I know I've called all of you to action before, because I've felt unsettled and prompted to do so. And I know there are so many more folks than I can even imagine already praying for Logan to be healed on this side of heaven. But there can always be more. And we need a bigger army. Logan needs a bigger army. I feel that to the very tips of my toes. God can accomplish anything with a simple thought, but this is a battle, an ultimate chess game. There are obstacles and push-backs from an opponent. I know that some of you will think I'm nuts, but I believe it to be true.
As I sat upstairs trying to compose myself earlier today, I went in search of a Bible. Of course I couldn't find mine, so I grabbed Abby's children's version and prayed, fervently, for something inspirational, something rife with meaning, to catch my eye. So I flipped it open and landed once again on the story of Jonah. Again. It's been a common theme, along with the stories of miraculous healing. The people prayed, and God heard them and responded.
My takeaway is that we need those prayers. We need as many as we can get. I cannot sit in a corner and eat my hair and moan and cry and give up just because things didn't go as I'd prayed they would go with the second MRI. Logan's life here on the earth is worth saving. Ask anyone at all who knows him and I don't think you'd find a soul who'd disagree.
So here's what I'm asking of you: If you know anyone at all who would be willing to offer up prayers for Logan's complete healing and you haven't yet asked them to join the team, please re-post part of this and/or send them this way. If you know of a church that would be willing to pray for him, please ask them to do so. Even if you don't think you know someone, please pass along Logan's story and maybe it will catch someone's eye. Even if you think I'm a bat-poo crazy religious zealot, find someone to pass it to; maybe the results will be surprising. I'm casting a net as far and wide as I can on my own, but I need your help to reach as many people as possible. After all, Ask and you shall receive, seek and you shall find; knock and the door will be opened unto you. I cling to this as this frustrating and incredibly scary time persists.
I know I've been a broken record. :) But I also know that the only certainty in this world is that God is ultimately in control. So I continue to appeal to Him to save my sunshine, to restore health, to seal out the cancer and to make our family whole once again. And honestly, I don't know what else to do. I'm just a mom trying to save her son; nothing more, nothing less. I don't think I'm inspirational or unusual. I'm just doing what anyone in my position would do.
Thank you.
So what if it's not smaller? It'll just make for a more amazing, God-stamped story down the road, right? It's easy to write that and I want to believe it, but when I think it, I get that feeling of having swallowed too much air: Like it's SO much to hope for that I can hardly fathom it coming to pass.
Logan is still a fighter. At this moment, he's acting like his usual, pre awareness-of-cancer self. He's sitting on the couch being silly with his sister. The oncologist on service this week, Dr. Golden, said we could go ahead and disconnect his Vanco (antibiotic pump), so he's not hooked up to anything at the moment. Aside from a somewhat wonky eye, the clip that attaches the tubes from his chemo port to his shirt and a general lack of hair, he's very normal.
Cancer be damned, he's doing well. That has to be worth something, even as I battle my own fears.
I'm scared to pieces over this. It's sort of like the feeling I had when I first learned there was a tumor. Then it got better, and we got the pathology report and the feeling came back again. Then he started treatment and the first two rounds led to tumor shrinkage, and it got better. Then this disappointing MRI... it comes in waves, it seems. I'm trying to remain mindful of that.
Even Adam is scared. I can see it in his eyes, even if he doesn't come out and say it. He's a private person. He also doesn't relish the notion of upsetting me, so he generally keeps his emotions in check and to himself. But I know he's worried and disappointed just like outwardly-emotionally-expressive-and-volatile me. And for him to be worried, you know it's serious, because he just doesn't waste energy worrying over much.
Before I forget to note it, we won't hear back from the surgeon until Monday, which is disappointing, but apparently he's on vacation and his office staff doesn't know where he went. So please pray that things will stay static (or get better!) between now and then. If he decides it's operable, he'll have surgery on my birthday. I've long-anticipated this as my 'lucky' birthday, since I like 1s and 3s and I'll be 33 on 1/11/11. My prayer is that if surgery IS part of that day, that he'll be able to get it all. Otherwise, we're likely looking at a cycle 5 starting early next week.
**************
So why am I writing again? What does the subject line mean? I know I've called all of you to action before, because I've felt unsettled and prompted to do so. And I know there are so many more folks than I can even imagine already praying for Logan to be healed on this side of heaven. But there can always be more. And we need a bigger army. Logan needs a bigger army. I feel that to the very tips of my toes. God can accomplish anything with a simple thought, but this is a battle, an ultimate chess game. There are obstacles and push-backs from an opponent. I know that some of you will think I'm nuts, but I believe it to be true.
As I sat upstairs trying to compose myself earlier today, I went in search of a Bible. Of course I couldn't find mine, so I grabbed Abby's children's version and prayed, fervently, for something inspirational, something rife with meaning, to catch my eye. So I flipped it open and landed once again on the story of Jonah. Again. It's been a common theme, along with the stories of miraculous healing. The people prayed, and God heard them and responded.
My takeaway is that we need those prayers. We need as many as we can get. I cannot sit in a corner and eat my hair and moan and cry and give up just because things didn't go as I'd prayed they would go with the second MRI. Logan's life here on the earth is worth saving. Ask anyone at all who knows him and I don't think you'd find a soul who'd disagree.
So here's what I'm asking of you: If you know anyone at all who would be willing to offer up prayers for Logan's complete healing and you haven't yet asked them to join the team, please re-post part of this and/or send them this way. If you know of a church that would be willing to pray for him, please ask them to do so. Even if you don't think you know someone, please pass along Logan's story and maybe it will catch someone's eye. Even if you think I'm a bat-poo crazy religious zealot, find someone to pass it to; maybe the results will be surprising. I'm casting a net as far and wide as I can on my own, but I need your help to reach as many people as possible. After all, Ask and you shall receive, seek and you shall find; knock and the door will be opened unto you. I cling to this as this frustrating and incredibly scary time persists.
I know I've been a broken record. :) But I also know that the only certainty in this world is that God is ultimately in control. So I continue to appeal to Him to save my sunshine, to restore health, to seal out the cancer and to make our family whole once again. And honestly, I don't know what else to do. I'm just a mom trying to save her son; nothing more, nothing less. I don't think I'm inspirational or unusual. I'm just doing what anyone in my position would do.
Thank you.
The 2nd MRI
I've been hemming and hawing over this entry for a little while now; over how to frame it, over what it all means. I'm finding that it's not getting any easier to type, so I'll just lay it all out there.
Philippa called Adam at 10 with the read. The tumor is still about the same size. It's crushing to hear those words, especially when we have such a great team of prayer warriors rallying around Logan and praying for his health. It's like yet another knife to my already bleeding heart. It's not what I wanted to hear in the slightest. I'm fighting an intense need to crawl out of my own skin just thinking about it.
But at the same time, I'm trying -- with a fair dose of effort -- to see the good in a less-than-good report. For one, it IS the same size. It's held steady and not gotten bigger. And I'm grateful for that. It's easy to forget, but we are dealing with an extremely aggressive form of cancer. It's very high-grade and very hard to treat.
For another, Philippa did say that the dye contrast they do (and I don't have more details on it, sorry) showed that it looked less aggressive; fewer really bright spots. So it's likely not growing as quickly as it did before. And for yet another, his spinal column is clear, so it doesn't show signs of having spread.
So in a nutshell, it's not really getting better, but it also doesn't appear to be getting worse, either.
It's a frustrating place to be. I feel fear. I feel anxiety. But more than that, I feel an intense form of disappointment. And if I'm being totally truthful, I'd say that I feel a little betrayed. I've prayed for healing, for eradication of the tumors every single day, multiple times a day, for the past four and a half months. I've gone into overdrive finding more and more people to join Logan's team. I know that God is hearing all of those prayers. And I'm just so, so disappointed that more hasn't been done. I don't understand why this mother's prayers don't carry more weight.
But in fairness, I can't see the 'what would've beens'. I can't see what would've happened had the tumor not been caught when it was. I can't see what Logan's status would be without all of his prayer warriors taking on the cause. My guess, based on what we've been through so far, is that we would've lost him by now.
I'm still acutely aware that this is a battle of giant proportions. In fact, as I was walking upstairs after Adam gave me the news, I had a distinct thought. It was just a single word, but it packed a punch:
Counterpoint.
After cycles one and two were so successful, I could see the hand of God moving. Although I hoped for more of the same from three and four, I couldn't well expect it because after all, there's another player in the game. So if God had the initial Point, it was logical to think that the counterpoint would come from the other side.
Following the counterpoint came another thought. It's the same old one I've had for months now: Expect amazing things. Keep expecting amazing things. Just hold on.
It's so hard to hold on to faith when you feel so raw, when you feel as if your skin has been peeled back repeatedly, rubbed with alcohol, and then reattached with something as impermanent as scotch tape. That's how it feels.
So what's next? We don't know. The neurosurgeon is out this week, so Philippa is in the process of trying to locate him so she can send the MRI and notes for his opinion. If he thinks surgery is a good option, he'll do that.
On, as it turns out in a wicked twist of 'fate' (in quotes because I don't believe in fate, of course), my 33rd birthday: January 11th.
If surgery is not an option, I don't know what happens next. Adam is going to send the scans and notes to the neuro in Boston who's had good success with AT/RTs for his thoughts. They use a different batch of medications for their chemo, so in theory that's an option, though it makes me nervous to even think about uprooting my entire family to go to the East Coast.
So onward we go. Please keep praying for Logan to be healed. The very thought of life without him makes my heart shatter into a million pieces. But in the same breath, I know I can't let fear take me out. I can't lose faith or heart. I can't let worries consume me or keep me from the business of recruiting more prayer warriors. That is, after all, what the other side would want me to do: It wants to see me broken, discouraged, disappointed, without hope.
Where God is, there's always hope. So I need to make sure He's with Logan and doing His work. And I need to remember that this whole journey has been a game of point/counterpoint, and that we've seen doses of both disappointment and victory along the way. So though I'm crying today, I'll be smiling again down the line.
Philippa called Adam at 10 with the read. The tumor is still about the same size. It's crushing to hear those words, especially when we have such a great team of prayer warriors rallying around Logan and praying for his health. It's like yet another knife to my already bleeding heart. It's not what I wanted to hear in the slightest. I'm fighting an intense need to crawl out of my own skin just thinking about it.
But at the same time, I'm trying -- with a fair dose of effort -- to see the good in a less-than-good report. For one, it IS the same size. It's held steady and not gotten bigger. And I'm grateful for that. It's easy to forget, but we are dealing with an extremely aggressive form of cancer. It's very high-grade and very hard to treat.
For another, Philippa did say that the dye contrast they do (and I don't have more details on it, sorry) showed that it looked less aggressive; fewer really bright spots. So it's likely not growing as quickly as it did before. And for yet another, his spinal column is clear, so it doesn't show signs of having spread.
So in a nutshell, it's not really getting better, but it also doesn't appear to be getting worse, either.
It's a frustrating place to be. I feel fear. I feel anxiety. But more than that, I feel an intense form of disappointment. And if I'm being totally truthful, I'd say that I feel a little betrayed. I've prayed for healing, for eradication of the tumors every single day, multiple times a day, for the past four and a half months. I've gone into overdrive finding more and more people to join Logan's team. I know that God is hearing all of those prayers. And I'm just so, so disappointed that more hasn't been done. I don't understand why this mother's prayers don't carry more weight.
But in fairness, I can't see the 'what would've beens'. I can't see what would've happened had the tumor not been caught when it was. I can't see what Logan's status would be without all of his prayer warriors taking on the cause. My guess, based on what we've been through so far, is that we would've lost him by now.
I'm still acutely aware that this is a battle of giant proportions. In fact, as I was walking upstairs after Adam gave me the news, I had a distinct thought. It was just a single word, but it packed a punch:
Counterpoint.
After cycles one and two were so successful, I could see the hand of God moving. Although I hoped for more of the same from three and four, I couldn't well expect it because after all, there's another player in the game. So if God had the initial Point, it was logical to think that the counterpoint would come from the other side.
Following the counterpoint came another thought. It's the same old one I've had for months now: Expect amazing things. Keep expecting amazing things. Just hold on.
It's so hard to hold on to faith when you feel so raw, when you feel as if your skin has been peeled back repeatedly, rubbed with alcohol, and then reattached with something as impermanent as scotch tape. That's how it feels.
So what's next? We don't know. The neurosurgeon is out this week, so Philippa is in the process of trying to locate him so she can send the MRI and notes for his opinion. If he thinks surgery is a good option, he'll do that.
On, as it turns out in a wicked twist of 'fate' (in quotes because I don't believe in fate, of course), my 33rd birthday: January 11th.
If surgery is not an option, I don't know what happens next. Adam is going to send the scans and notes to the neuro in Boston who's had good success with AT/RTs for his thoughts. They use a different batch of medications for their chemo, so in theory that's an option, though it makes me nervous to even think about uprooting my entire family to go to the East Coast.
So onward we go. Please keep praying for Logan to be healed. The very thought of life without him makes my heart shatter into a million pieces. But in the same breath, I know I can't let fear take me out. I can't lose faith or heart. I can't let worries consume me or keep me from the business of recruiting more prayer warriors. That is, after all, what the other side would want me to do: It wants to see me broken, discouraged, disappointed, without hope.
Where God is, there's always hope. So I need to make sure He's with Logan and doing His work. And I need to remember that this whole journey has been a game of point/counterpoint, and that we've seen doses of both disappointment and victory along the way. So though I'm crying today, I'll be smiling again down the line.
Tuesday, December 28, 2010
Hurry up and wait... again.
Logan had his second and extraordinarily pivotal MRI this afternoon. (He also had his second RSV vaccination as well as an unscheduled ultrasound to check his line, since it keeps clogging. It was clear, so he just has a sticky tube.) Philippa will call at some point tomorrow with the results, after the neurosurgeon has a chance to look at the images and give his weighty two cents.
I'm nervous, but not really afraid. I've prayed over the outcome of this MRI multiple times a day every day for the past four and a half months. Simply put, I've prayed for total pulverization and eradication of the tumors. And I know a lot of other people have prayed for exactly the same thing. I also know that God can totally make that happen. But will He? I don't know, hence the nerves.
I spoke with my mom on the phone briefly this evening. I was honest: With everyone who's been lifting Logan up in prayer, I can't imagine that the news wouldn't be of a positive ilk. But in the same breath, I'm concerned. Worried. Again, not really afraid, but certainly feeling unstable, like I'm standing on the deck of a small boat that's bobbing and bouncing through choppy waters. I can keep my balance, but I waver.
There's much more that I could write, but I'm so drained that I can't quite master the words.
Thank you for continuing to pray for complete healing for Logan and for our family as we go down this unexpected (and lousy) path. Blessings to you and yours.
And I'll update once I have news.
I'm nervous, but not really afraid. I've prayed over the outcome of this MRI multiple times a day every day for the past four and a half months. Simply put, I've prayed for total pulverization and eradication of the tumors. And I know a lot of other people have prayed for exactly the same thing. I also know that God can totally make that happen. But will He? I don't know, hence the nerves.
I spoke with my mom on the phone briefly this evening. I was honest: With everyone who's been lifting Logan up in prayer, I can't imagine that the news wouldn't be of a positive ilk. But in the same breath, I'm concerned. Worried. Again, not really afraid, but certainly feeling unstable, like I'm standing on the deck of a small boat that's bobbing and bouncing through choppy waters. I can keep my balance, but I waver.
There's much more that I could write, but I'm so drained that I can't quite master the words.
Thank you for continuing to pray for complete healing for Logan and for our family as we go down this unexpected (and lousy) path. Blessings to you and yours.
And I'll update once I have news.
Monday, December 27, 2010
Jittery
Tomorrow is the day. The day. Logan's second MRI. It's been in the back of my mind for a month or so now, ever since we had the initial date of January 4th, he did well with cycle 4, and it was moved up to December 28th. Tomorrow is the day that someone will find out how well chemo rounds 3 and 4 did with regard to shrinking the tumors. It probably won't be us, since Philippa said not to expect news until Wednesday when Dr. Sun, the neurosurgeon, has a chance to take a detailed look at the images. But still, someone will know what's going on.
And I'm scared.
Of course I am: A lot rides on these little pictures of his brain and spinal column. The results will dictate what comes next: Surgery, chemo round 5, or the transplant cycle. My quiet prayer is for the transplant cycle; I'm hoping that it will show no signs of the tumors and that surgery won't be needed, since Logan had a hard time recovering from his initial procedure back in August. The transplant cycle is the big karate chop to Logan's cancer -- the real knockout round. And I know the team wants to get him to transplant as quickly as possible, so as to have the best possible chance of preventing additional tumor growth (or recurrence down the line). Relapse is particularly common in kids with AT/RTs, so the sooner we can punch it out for good, the better.
Even though we're nearly 4 1/2 months into this process and we've spent countless hours at CHO and life has changed indelibly and forever, part of me still feels like I'm walking around in a dream. Fortunately, the edges have softened a little, allowing me to call it a 'dream' (even if it's still a bad one) instead of a 'nightmare'. After all, it'd be hard to still call it a nightmare after we've seen the amazing things we've seen and interacted with the incredible people we've met. I was telling Adam the other day that I really enjoy knowing Philippa and Molly. They're incredible women and so very good at what they do. But then I paused and sighed, and noted that I wished I didn't know them at all. But I do. And I'm glad to know them. People as good as they are can't possibly be party to a full-on nightmare, so I thank God for them. They probably don't know it, but they make this whole ordeal much easier.
I've given up on the 'whys' for now (though I'm sure I'll go running back to them at some point, since I'm human and it's hard to not wonder why our family? Why Logan? It's just part of my essence to be a Doubting Thomasina.) I still think it's because he's so purely good to his core. I still believe this is a spiritual battle. And I still believe that Logan's prayer army has helped to bring our situation to the Lord in a vigorous, can't-be-ignored kind of way. And I thank ALL of you who pray for him and who've recruited others to pray for your invaluable role in the process. I ask that you continue to pray and to spread the word to your praying friends and churches. I know it sounds a little selfish for me to ask over and over again, but there are always more people who can jump aboard, and I cling to the healing stories in the Bible that have been brought to my attention so many times: The paralytic who was healed thanks to the faith of his friends, the woman who was healed because of her own faith. I'm calling upon my own faith to guide me, and it says to recruit, recruit, recruit, so that's what I'm doing. It's what any mother would do to save her child. So onward I go, even if I sound like a pestering, persistent, annoying gal at times. What can I say? In many ways, I'm just a bulldog.
Please pray for us as we await the results, and for an uneventful MRI for Logan. He's not happy about going back, but it's an outpatient procedure so at least he should be home by evening. More than anything, please pray for good, workable results. I want God to really wow them. I told Molly a few months ago to expect great things, amazing things. That faith has a role in this world and that Logan has a purpose here. And I want God to prove that to her. Of course I do; he's my little guy and I love him so dearly that no other outcome is acceptable. So it's my prayer. My big, scary, almost-too-much-to-hope-for prayer. And I thank you for praying it with me.
If faith can move a mountain, it can knock out a cancer. Believe it.
I want to believe; help my unbelief.
And I'm scared.
Of course I am: A lot rides on these little pictures of his brain and spinal column. The results will dictate what comes next: Surgery, chemo round 5, or the transplant cycle. My quiet prayer is for the transplant cycle; I'm hoping that it will show no signs of the tumors and that surgery won't be needed, since Logan had a hard time recovering from his initial procedure back in August. The transplant cycle is the big karate chop to Logan's cancer -- the real knockout round. And I know the team wants to get him to transplant as quickly as possible, so as to have the best possible chance of preventing additional tumor growth (or recurrence down the line). Relapse is particularly common in kids with AT/RTs, so the sooner we can punch it out for good, the better.
Even though we're nearly 4 1/2 months into this process and we've spent countless hours at CHO and life has changed indelibly and forever, part of me still feels like I'm walking around in a dream. Fortunately, the edges have softened a little, allowing me to call it a 'dream' (even if it's still a bad one) instead of a 'nightmare'. After all, it'd be hard to still call it a nightmare after we've seen the amazing things we've seen and interacted with the incredible people we've met. I was telling Adam the other day that I really enjoy knowing Philippa and Molly. They're incredible women and so very good at what they do. But then I paused and sighed, and noted that I wished I didn't know them at all. But I do. And I'm glad to know them. People as good as they are can't possibly be party to a full-on nightmare, so I thank God for them. They probably don't know it, but they make this whole ordeal much easier.
I've given up on the 'whys' for now (though I'm sure I'll go running back to them at some point, since I'm human and it's hard to not wonder why our family? Why Logan? It's just part of my essence to be a Doubting Thomasina.) I still think it's because he's so purely good to his core. I still believe this is a spiritual battle. And I still believe that Logan's prayer army has helped to bring our situation to the Lord in a vigorous, can't-be-ignored kind of way. And I thank ALL of you who pray for him and who've recruited others to pray for your invaluable role in the process. I ask that you continue to pray and to spread the word to your praying friends and churches. I know it sounds a little selfish for me to ask over and over again, but there are always more people who can jump aboard, and I cling to the healing stories in the Bible that have been brought to my attention so many times: The paralytic who was healed thanks to the faith of his friends, the woman who was healed because of her own faith. I'm calling upon my own faith to guide me, and it says to recruit, recruit, recruit, so that's what I'm doing. It's what any mother would do to save her child. So onward I go, even if I sound like a pestering, persistent, annoying gal at times. What can I say? In many ways, I'm just a bulldog.
Please pray for us as we await the results, and for an uneventful MRI for Logan. He's not happy about going back, but it's an outpatient procedure so at least he should be home by evening. More than anything, please pray for good, workable results. I want God to really wow them. I told Molly a few months ago to expect great things, amazing things. That faith has a role in this world and that Logan has a purpose here. And I want God to prove that to her. Of course I do; he's my little guy and I love him so dearly that no other outcome is acceptable. So it's my prayer. My big, scary, almost-too-much-to-hope-for prayer. And I thank you for praying it with me.
If faith can move a mountain, it can knock out a cancer. Believe it.
I want to believe; help my unbelief.
Saturday, December 25, 2010
Merry Christmas
A very hearty Merry Christmas to all of you. My tank is just about empty, but I wanted to stop by and wish you all the best today. We had a nice day together, our first Christmas as a family of six. Logan was, predictably, the first one up, followed in relatively short order by Abby and Isaac. Brady was out cold, but the other three took care of it for us and he too was up and ready for action before 7:30 a.m. There was much good cheer, laughter and wrapping paper strewn about the living room by the time we were finished, all markers of a successful morning. The rest of the day was spent playing new games, hanging out in PJs and (if you were me and Brady) sleeping.
I, unfortunately, am not feeling fabulous, and downed some nighttime sinus medicine a few minutes ago to try to combat my sniffles, so I'm already falling asleep here at my keyboard. I'm hoping it's a transitory allergy-related issue, but I guess I'll see for sure soon enough. The idea of being sick around Logan makes me nervous, at best, even though he has a white count right now. If you feel compelled, please pray for my health.
Anyway, my best wishes to you and your family. Many blessings to you, and thank you as always for your continued prayers for my sunshine.
I, unfortunately, am not feeling fabulous, and downed some nighttime sinus medicine a few minutes ago to try to combat my sniffles, so I'm already falling asleep here at my keyboard. I'm hoping it's a transitory allergy-related issue, but I guess I'll see for sure soon enough. The idea of being sick around Logan makes me nervous, at best, even though he has a white count right now. If you feel compelled, please pray for my health.
Anyway, my best wishes to you and your family. Many blessings to you, and thank you as always for your continued prayers for my sunshine.
Thursday, December 23, 2010
Praise the Lord Anyhow
There's a Precious Moments figurine entitled 'Praise the Lord Anyhow' which features an utterly stressed out-looking girl hunched over behind her desk, papers strewn about, toppled mug on the floor. I haven't seen it in ages, but I find myself sighing as I utter those very words multiple times a day of late: Praise the Lord anyhow.
Today's already involved one of those moments. After a relatively peaceful night (meaning that Brady was up only every few hours instead of every 45 minutes), Adam came into our room this morning to let me know that he'd been unable to flush Logan's line, so we'd need to take him to CHO. I asked Logan if he had a parent preference, and he chose me, so we packed up the diaper bag, the baby and his pump backpack and headed up to the hospital to see Philippa in the oncology clinic.
Much to my surprise, I wasn't annoyed by the disruption to our plan for the day. What?! I know, crazy, right? It may be a sign of me being too tired to adequately process what was going on, or perhaps I'm starting to relinquish a little of the life-control that I've so relished since childhood. Regardless of the root, it was refreshing to not stress over the change in plan. We got there, went in, exhanged pleasantries which included Philippa calling Brady adorable and then immediately whispering to Logan that he (Logan)'s the cutest boy in the word, and then she administered an anti-clotting medication to see if it would nip the issue in the bud. While we waited, we played a Lego game that she'd brought to him and we had some nice, one on one time while Brady chilled in his carseat (or with me, snuggling against his buddies).
The drug didn't work right away, but after an hour of letting it do its thing, it cleared out nicely and she instructed us to flush his line with saline more than once each day in order to keep it clear. She very kindly walked us out to our car, and we were off.
So yeah, it wasn't what we'd planned for the morning and we're now behind for the day with lots of little sundries. But you know what? I 'praise the Lord anyhow'.
Thanks for continuing to pray for Logan, and a Merry almost-Christmas to you and yours.
Today's already involved one of those moments. After a relatively peaceful night (meaning that Brady was up only every few hours instead of every 45 minutes), Adam came into our room this morning to let me know that he'd been unable to flush Logan's line, so we'd need to take him to CHO. I asked Logan if he had a parent preference, and he chose me, so we packed up the diaper bag, the baby and his pump backpack and headed up to the hospital to see Philippa in the oncology clinic.
Much to my surprise, I wasn't annoyed by the disruption to our plan for the day. What?! I know, crazy, right? It may be a sign of me being too tired to adequately process what was going on, or perhaps I'm starting to relinquish a little of the life-control that I've so relished since childhood. Regardless of the root, it was refreshing to not stress over the change in plan. We got there, went in, exhanged pleasantries which included Philippa calling Brady adorable and then immediately whispering to Logan that he (Logan)'s the cutest boy in the word, and then she administered an anti-clotting medication to see if it would nip the issue in the bud. While we waited, we played a Lego game that she'd brought to him and we had some nice, one on one time while Brady chilled in his carseat (or with me, snuggling against his buddies).
The drug didn't work right away, but after an hour of letting it do its thing, it cleared out nicely and she instructed us to flush his line with saline more than once each day in order to keep it clear. She very kindly walked us out to our car, and we were off.
So yeah, it wasn't what we'd planned for the morning and we're now behind for the day with lots of little sundries. But you know what? I 'praise the Lord anyhow'.
Thanks for continuing to pray for Logan, and a Merry almost-Christmas to you and yours.
Wednesday, December 22, 2010
12/22
The tiredness is catching up with me. Between Brady and Logan, there wasn't a lot of sleeping going on last night. I'm hoping for better performances this coming go-round.
Logan, Brady and I went shopping today for Adam's Christmas presents. It was just a duo of stops: First to Walmart and on to Costco for lunch, but it was such a sweet time for me. Logan had good energy; he actually walked on his own through Walmart, his Lightning McQueen backpack strapped on with the 24-hour antibiotic pump inside, and never complained about his legs being too tired. So thankful for that; such a change from months past. He was a little more tired by the time we got to Costco, but again, was calm about it, ate a few bites of his pizza before deeming himself 'all done', and in general was very pleasant.
There was a distinctly 'Logan' moment that took place at Costco while I was waiting in line to pick up our food. I was a few feet away from the cart, which housed both a sleeping Brady in his carseat and Logan in the kid-seat. I happened to glance over at them, and saw that Logan was smiling a huge, genuine grin at something in the distance I couldn't see. I still have no idea what he saw -- could've been another kid at play, someone smiling at him, anything -- but it got me right in the heart to see his little spirit so pleased with whatever secret stimuli he enjoyed. And it touched me deeply to see shades of the real Logan back once again. I've struggled lately with what the chemo has done to his appearance. While I know it's temporary and transient and not important, it still breaks my heart to see him so physically broken. But in that moment, I could see the real him, despite the hair loss, the missing eyelashes and the wan face. And it was a beautiful, beautiful thing. It reminded me of an important Biblical truth: The spirit is willing, but the flesh is weak.
At any rate, I'm falling asleep and as I've mentioned before, drool on the keyboard just isn't a good thing. Bless you all, and many thanks for continued prayers.
Logan, Brady and I went shopping today for Adam's Christmas presents. It was just a duo of stops: First to Walmart and on to Costco for lunch, but it was such a sweet time for me. Logan had good energy; he actually walked on his own through Walmart, his Lightning McQueen backpack strapped on with the 24-hour antibiotic pump inside, and never complained about his legs being too tired. So thankful for that; such a change from months past. He was a little more tired by the time we got to Costco, but again, was calm about it, ate a few bites of his pizza before deeming himself 'all done', and in general was very pleasant.
There was a distinctly 'Logan' moment that took place at Costco while I was waiting in line to pick up our food. I was a few feet away from the cart, which housed both a sleeping Brady in his carseat and Logan in the kid-seat. I happened to glance over at them, and saw that Logan was smiling a huge, genuine grin at something in the distance I couldn't see. I still have no idea what he saw -- could've been another kid at play, someone smiling at him, anything -- but it got me right in the heart to see his little spirit so pleased with whatever secret stimuli he enjoyed. And it touched me deeply to see shades of the real Logan back once again. I've struggled lately with what the chemo has done to his appearance. While I know it's temporary and transient and not important, it still breaks my heart to see him so physically broken. But in that moment, I could see the real him, despite the hair loss, the missing eyelashes and the wan face. And it was a beautiful, beautiful thing. It reminded me of an important Biblical truth: The spirit is willing, but the flesh is weak.
At any rate, I'm falling asleep and as I've mentioned before, drool on the keyboard just isn't a good thing. Bless you all, and many thanks for continued prayers.
Tuesday, December 21, 2010
Tuesday
Some women find themselves suffering from headaches while pregnant, but not me. Nope. Nary a one. I get them after I give birth. So forgive me for being brief, but I have a raging headache at the moment yet wanted to give a quick update on Logan and the wider 'us'.
He was indeed discharged today at around 2 PM. He and Adam got home at around 3. I'd had something of a crazy day, so I was happy to see them, and was even happier to see Logan round the corner into the family room and immediately ask where's the new baby? I want to see the new baby!' Said baby was asleep in the porta crib, and Logan's face morphed into his trademark huge grin as he peeked in on Brady. He really does have an affinity for his new brother, and it warms my heart.
Since he's now recovered and we don't have to deal with him being neutropenic, he was allowed to choose our dinner destination, and opted for what had been a frequented Saturday lunch locale during the months leading up to his diagnosis: Sweet Tomatoes. He hoovered his cheese and a few other items, and then before everyone was finished eating, demanded that we leave. It's one of the challenges of dealing with him these days: He gets what he wants when he wants it while at CHO, so it's hard for him to come home and become part of the physical family unit once again. But we stay strong with him, telling him that yes, we know he'd like to go, but that as a member of the family, he needs to be patient and wait for everyone else to finish first. Honestly, it's frustrating, but it's a small price to pay for having us all together again.
While I'm on the subject of togetherness, I want to touch briefly on something super mundane, but super meaningful to me. Tonight marked our first trip out in the car as a family of six. Four filled car seats. There were times a few months ago when I worried that it would never happen; that we'd bought our minivan in vain back in July. But no, because we've now used it as we intended to use it when it was purchased: To carry our four children. And it felt really, really good. It was almost as if I could exhale just a little, over something as simple as those few minutes riding along in the car, even if Brady was screaming and Isaac was making loud, odd noises, and Abby and Logan were singing to try to get the littlest guy to calm down. There was a harmony underlying the cacophony, and I don't think I'll forget it anytime soon. A simple, everyday moment that we all take for granted was magnified in a brand new way.
When we got home, we had a quick visit from the owner of Abby (and Logan)'s dance studio (thank you, Sherri; I'm truly blown away), and then Adam hooked Logan up to his TPN and antibiotic pumps with no issue. When I went upstairs to say goodnight, he was already nearly asleep, so I sat beside his bed as I've done in the past and just prayed. For wisdom, for patience, for healing -- for eradication, pulverization of the tumors, for cleansing, for restoration, for sealing and future protection--, for peace. For all of those simple things that seem so elusive at times but that I know, that I believe, are just around the corner for our family. When I'm able to clear the cobwebs and busyness from my mind, praying is such a soothing activity for me these days. Such a solace from the storm.
So anyway. Thank you so much for your continued prayers. Please pray for good health for our family and for a good Christmas season. And as always, for healing for Logan! Blessings to you all, and remember the reason for the season as Saturday approaches.
He was indeed discharged today at around 2 PM. He and Adam got home at around 3. I'd had something of a crazy day, so I was happy to see them, and was even happier to see Logan round the corner into the family room and immediately ask where's the new baby? I want to see the new baby!' Said baby was asleep in the porta crib, and Logan's face morphed into his trademark huge grin as he peeked in on Brady. He really does have an affinity for his new brother, and it warms my heart.
Since he's now recovered and we don't have to deal with him being neutropenic, he was allowed to choose our dinner destination, and opted for what had been a frequented Saturday lunch locale during the months leading up to his diagnosis: Sweet Tomatoes. He hoovered his cheese and a few other items, and then before everyone was finished eating, demanded that we leave. It's one of the challenges of dealing with him these days: He gets what he wants when he wants it while at CHO, so it's hard for him to come home and become part of the physical family unit once again. But we stay strong with him, telling him that yes, we know he'd like to go, but that as a member of the family, he needs to be patient and wait for everyone else to finish first. Honestly, it's frustrating, but it's a small price to pay for having us all together again.
While I'm on the subject of togetherness, I want to touch briefly on something super mundane, but super meaningful to me. Tonight marked our first trip out in the car as a family of six. Four filled car seats. There were times a few months ago when I worried that it would never happen; that we'd bought our minivan in vain back in July. But no, because we've now used it as we intended to use it when it was purchased: To carry our four children. And it felt really, really good. It was almost as if I could exhale just a little, over something as simple as those few minutes riding along in the car, even if Brady was screaming and Isaac was making loud, odd noises, and Abby and Logan were singing to try to get the littlest guy to calm down. There was a harmony underlying the cacophony, and I don't think I'll forget it anytime soon. A simple, everyday moment that we all take for granted was magnified in a brand new way.
When we got home, we had a quick visit from the owner of Abby (and Logan)'s dance studio (thank you, Sherri; I'm truly blown away), and then Adam hooked Logan up to his TPN and antibiotic pumps with no issue. When I went upstairs to say goodnight, he was already nearly asleep, so I sat beside his bed as I've done in the past and just prayed. For wisdom, for patience, for healing -- for eradication, pulverization of the tumors, for cleansing, for restoration, for sealing and future protection--, for peace. For all of those simple things that seem so elusive at times but that I know, that I believe, are just around the corner for our family. When I'm able to clear the cobwebs and busyness from my mind, praying is such a soothing activity for me these days. Such a solace from the storm.
So anyway. Thank you so much for your continued prayers. Please pray for good health for our family and for a good Christmas season. And as always, for healing for Logan! Blessings to you all, and remember the reason for the season as Saturday approaches.
Monday, December 20, 2010
The Logan Update: 12/20/10
I've started to update several times over the course of the past few days. It's usually the plaintive 'I'm hungry! I'm hungry!' cries of young Brady that have stopped me mid-sentence. Now that he's sleeping and Adam is around to cuddle him (and provide the all-important pacifier) if he awakes, I'm finally good to go!
The past few days have been good for Logan. Really, really good. So good, in fact, that I can feel the grace of God through them. His numbers continued to improve steadily from the day 15 WBC count of .8. We figure that he likely began his recovery on day 14 with a .1, but it's always hard to tell since it's such a scrawny little number. Still, a day 15 beginning to recovery is amazing for a headstart kid on his 4th cycle of chemo. I didn't see today's number, but yesterday's was 13.0, and all of his other numbers -- hemoglobin, red cells, platelets -- are all now increasing on their own. So, all things considered, he's now 'recovered'. His energy level is returning to a more normal level and he's been to the playroom and enjoyed some animated conversations with his nurses and visitors.
He's still at CHO, though. He's now met the requirements for discharge set forth when he was admitted last week: (More than) 48 hours without a fever (he actually only had one the first day or two of this stay), three days of negative blood cultures (only the first one came back positive), and an ANC of 200 (as of yesterday, it sat at 9,100). He's theoretically set to be released tomorrow (yay!); right now we're waiting on the team to get the medications ordered and ready for us. When he comes home, he'll be on an antibiotic pump 24 hours a day to combat the blood infection and make sure it doesn't rear its ugly head again. It's supposedly like his TPN (liquid nutrition) pump, which he's accustomed to wearing at home overnight, but he'll have to get used to being hooked up 24/7 and will lug it around in a tiny backpack. Adam told him this afternoon and he was absolutely okay with it as long as it means he gets to be at home. So that's a relief.
I've taken Brady to see Logan a few times now and he's loved every second with his baby brother. He especially loves sitting with him in his bed, singing to him and patting his tiny, soft head. The scene makes my heart swell with joy and pride every time. Logan doesn't just light up when he sees Brady; he illuminates fully from the inside out. No one makes him smile in quite the same way. So although Brady wasn't planned by us, per se, he was very clearly planned by God and timed perfectly, even if the timing seemed terrible to us for a long while. It's nice to see still frames of the great plan revealed now and again.
To switch gears, we're now 8 days from the second MRI and my anxiety level is high. Do you trust Me? Do you trust Me? runs through my head several times a day. And I do... sort of. (It's hard! I'm working on it.) And then I think why wouldn't I trust? After all, after being very sick again last week, Logan made an impressive recovery once again. And honestly, the whole situation bears God's handprint. Just check out the sequence of events: I went into labor when Logan was home, which is what I wanted and prayed for. I had Brady, and he was able to join the rest of his family to visit the baby on day one. The next day, Adam's parents couldn't draw his blood, so they had to take him in to CHO to have it done there. Had they been successful, the numbers would've come back good and he wouldn't have required a trip to CHO that day, which meant Philippa wouldn't have seen him and wouldn't have remanded him to a morphine pump, the doctor wouldn't have had a look at his infected lip, and he wouldn't have been there for immediate treatment as soon as he spiked the first fever. It upset and angered me at the time -- and trust me, my eyes were so swollen from crying over it that I could hardly open the left one for 18 hours -- but now I see that the timing was ideal. The doctors were able to nip the infection in the bud just about literally the second it hit his bloodstream. You can't ask for anything more than that when you're engaged in a battle like this.
But despite what I've seen, I worry over the MRI. My quietest, innermost prayer is that all traces of the cancer will be gone, but it seems like too much to request. After all, Logan has responded incredibly well to the chemo. His marrow has been almost shockingly resilient. As I noted earlier, a day 15 recovery start for his protocol is excellent, even for cycle ONE. Cycle four... amazing. It's gone so well overall that I fear what's to come, which I realize is horribly backward. I should and DO praise God for his provision and for holding Logan in His hands as he clearly has all along. But still, I spend much of my time almost afraid to breathe; worried that if I inhale, all of the good -- no, amazing -- things we've seen come to pass since this journey began four months ago will somehow vanish. And the thought is almost enough to knock the breath from my lungs. So I suppose I go back to the fundamentals: I want to believe; help my unbelief.
I thank you as always for your continued prayers. Please do continue to pray for complete healing for Logan and for permanent eradication of the tumors. In addition, pray for me to feel peace over the approaching MRI. A sad truth about me is that I'm particularly susceptible to negative thoughts, feelings and fears as holidays approach; it's a 'clever' trick that's used to get to me when I should be enjoying happy times with my family. Please pray that I'll be able to resist the negativity this season and truly savor every moment with my whole -- and expanded! -- family. Finally, pray for all four of my children to have fun together over the coming week or two. They don't get much time as siblings these days, and I know they all miss one another so very much. Pray against the usual bickering and for harmony.
Blessings to you all.
The past few days have been good for Logan. Really, really good. So good, in fact, that I can feel the grace of God through them. His numbers continued to improve steadily from the day 15 WBC count of .8. We figure that he likely began his recovery on day 14 with a .1, but it's always hard to tell since it's such a scrawny little number. Still, a day 15 beginning to recovery is amazing for a headstart kid on his 4th cycle of chemo. I didn't see today's number, but yesterday's was 13.0, and all of his other numbers -- hemoglobin, red cells, platelets -- are all now increasing on their own. So, all things considered, he's now 'recovered'. His energy level is returning to a more normal level and he's been to the playroom and enjoyed some animated conversations with his nurses and visitors.
He's still at CHO, though. He's now met the requirements for discharge set forth when he was admitted last week: (More than) 48 hours without a fever (he actually only had one the first day or two of this stay), three days of negative blood cultures (only the first one came back positive), and an ANC of 200 (as of yesterday, it sat at 9,100). He's theoretically set to be released tomorrow (yay!); right now we're waiting on the team to get the medications ordered and ready for us. When he comes home, he'll be on an antibiotic pump 24 hours a day to combat the blood infection and make sure it doesn't rear its ugly head again. It's supposedly like his TPN (liquid nutrition) pump, which he's accustomed to wearing at home overnight, but he'll have to get used to being hooked up 24/7 and will lug it around in a tiny backpack. Adam told him this afternoon and he was absolutely okay with it as long as it means he gets to be at home. So that's a relief.
I've taken Brady to see Logan a few times now and he's loved every second with his baby brother. He especially loves sitting with him in his bed, singing to him and patting his tiny, soft head. The scene makes my heart swell with joy and pride every time. Logan doesn't just light up when he sees Brady; he illuminates fully from the inside out. No one makes him smile in quite the same way. So although Brady wasn't planned by us, per se, he was very clearly planned by God and timed perfectly, even if the timing seemed terrible to us for a long while. It's nice to see still frames of the great plan revealed now and again.
To switch gears, we're now 8 days from the second MRI and my anxiety level is high. Do you trust Me? Do you trust Me? runs through my head several times a day. And I do... sort of. (It's hard! I'm working on it.) And then I think why wouldn't I trust? After all, after being very sick again last week, Logan made an impressive recovery once again. And honestly, the whole situation bears God's handprint. Just check out the sequence of events: I went into labor when Logan was home, which is what I wanted and prayed for. I had Brady, and he was able to join the rest of his family to visit the baby on day one. The next day, Adam's parents couldn't draw his blood, so they had to take him in to CHO to have it done there. Had they been successful, the numbers would've come back good and he wouldn't have required a trip to CHO that day, which meant Philippa wouldn't have seen him and wouldn't have remanded him to a morphine pump, the doctor wouldn't have had a look at his infected lip, and he wouldn't have been there for immediate treatment as soon as he spiked the first fever. It upset and angered me at the time -- and trust me, my eyes were so swollen from crying over it that I could hardly open the left one for 18 hours -- but now I see that the timing was ideal. The doctors were able to nip the infection in the bud just about literally the second it hit his bloodstream. You can't ask for anything more than that when you're engaged in a battle like this.
But despite what I've seen, I worry over the MRI. My quietest, innermost prayer is that all traces of the cancer will be gone, but it seems like too much to request. After all, Logan has responded incredibly well to the chemo. His marrow has been almost shockingly resilient. As I noted earlier, a day 15 recovery start for his protocol is excellent, even for cycle ONE. Cycle four... amazing. It's gone so well overall that I fear what's to come, which I realize is horribly backward. I should and DO praise God for his provision and for holding Logan in His hands as he clearly has all along. But still, I spend much of my time almost afraid to breathe; worried that if I inhale, all of the good -- no, amazing -- things we've seen come to pass since this journey began four months ago will somehow vanish. And the thought is almost enough to knock the breath from my lungs. So I suppose I go back to the fundamentals: I want to believe; help my unbelief.
I thank you as always for your continued prayers. Please do continue to pray for complete healing for Logan and for permanent eradication of the tumors. In addition, pray for me to feel peace over the approaching MRI. A sad truth about me is that I'm particularly susceptible to negative thoughts, feelings and fears as holidays approach; it's a 'clever' trick that's used to get to me when I should be enjoying happy times with my family. Please pray that I'll be able to resist the negativity this season and truly savor every moment with my whole -- and expanded! -- family. Finally, pray for all four of my children to have fun together over the coming week or two. They don't get much time as siblings these days, and I know they all miss one another so very much. Pray against the usual bickering and for harmony.
Blessings to you all.
Friday, December 17, 2010
Friday Afternoon
I have so much to say, but so little time, so I hope I can do justice to all I have to share.
In short, it's been a good day so far. Though it still feels stiff and sore, my neck is much improved over last night. I'm thankful for that.
Adam, Brady and I came to CHO this morning after dropping Abby off for her last day of school before Winter Break, and Isaac with Adam's dad. The doctors were rounding just as we arrived, so we were able to get the report firsthand. His last fever was yesterday afternoon and his counts are up! Good news on both counts. His WBC count this morning was 1.9, so yesterday's .8 was no fluke. And his ANC sat at about 600. So big praises for those numbers! On the downside, he complained of more pain in his throat overnight, so they decided to up his pain med PCA to a higher level. So we need to continue to avoid the fevers, and to have three days of negative blood cultures in order to get out of here. Please pray for those goals. I'm awed by how our prayers have already been answered! To begin recovery on day 15 of cycle 4 seems amazing to me.
Logan was very excited to see Brady again. Despite his obvious discomfort and tiredness, he wanted to hold him immediately. He cuddled him, sang to him and held his little hands. He just has a sweetness about him that's unparalleled in other 4-year olds I've known. While Abby looked nervous and uncomfortable when Brady cried as she held him the other day, Logan was disappointed and nearly cried not when Brady cried, but when his rendition of the ABC Song failed to calm his little brother and Adam whisked him away to me to be nursed instead. Logan wanted to be able to help him feel better and was sad that he wasn't given more time, even if that time involved Brady screaming in his ear.
At some point, I want to reflect a little on my time in the ER last night and its significance in this massive chess game we're playing. But now's not the time; I'll try to return later.
Thank you for continuing to pray for Logan.
In short, it's been a good day so far. Though it still feels stiff and sore, my neck is much improved over last night. I'm thankful for that.
Adam, Brady and I came to CHO this morning after dropping Abby off for her last day of school before Winter Break, and Isaac with Adam's dad. The doctors were rounding just as we arrived, so we were able to get the report firsthand. His last fever was yesterday afternoon and his counts are up! Good news on both counts. His WBC count this morning was 1.9, so yesterday's .8 was no fluke. And his ANC sat at about 600. So big praises for those numbers! On the downside, he complained of more pain in his throat overnight, so they decided to up his pain med PCA to a higher level. So we need to continue to avoid the fevers, and to have three days of negative blood cultures in order to get out of here. Please pray for those goals. I'm awed by how our prayers have already been answered! To begin recovery on day 15 of cycle 4 seems amazing to me.
Logan was very excited to see Brady again. Despite his obvious discomfort and tiredness, he wanted to hold him immediately. He cuddled him, sang to him and held his little hands. He just has a sweetness about him that's unparalleled in other 4-year olds I've known. While Abby looked nervous and uncomfortable when Brady cried as she held him the other day, Logan was disappointed and nearly cried not when Brady cried, but when his rendition of the ABC Song failed to calm his little brother and Adam whisked him away to me to be nursed instead. Logan wanted to be able to help him feel better and was sad that he wasn't given more time, even if that time involved Brady screaming in his ear.
At some point, I want to reflect a little on my time in the ER last night and its significance in this massive chess game we're playing. But now's not the time; I'll try to return later.
Thank you for continuing to pray for Logan.
Thursday, December 16, 2010
Because we can never have enough drama...
I didn't post about this earlier because I didn't want to take the focus away from my sweet boy, but now I feel like I must. When I was discharged from the hospital, I went ahead and consented to have the DTaP shot. It all went off without a hitch, we left, and I thought nothing of it again... until about 5 PM. That's when the 'soreness at the injection site' -- my upper left arm -- I was told to expect became searing pain and stiffness not only at the site, but along my upper back and the lefthand side of my neck.
I took a Hydrocodone tab, sure that it would help, but it hasn't done much, and I'm here in pretty major pain, unable to sleep or get comfortable and assuming that a trip to the ER is probably going to happen sometime soon.
So yes, we can never have enough drama, it seems. Please pray that whatever is causing my pain, immobility and discomfort will right itself soon so I can sleep and not worry.
I took a Hydrocodone tab, sure that it would help, but it hasn't done much, and I'm here in pretty major pain, unable to sleep or get comfortable and assuming that a trip to the ER is probably going to happen sometime soon.
So yes, we can never have enough drama, it seems. Please pray that whatever is causing my pain, immobility and discomfort will right itself soon so I can sleep and not worry.
The Logan Update: 12/16/10
Sorry this is brief; I'm a bit tired, to put it mildly. Here's the info I want to pass along, just to help make your prayers more pointed.
Logan still has a highish fever, and is not feeling particularly well. In order for him to come home, we need the following things to come to pass:
1 - Negative blood cultures.
2 - No fever for 48 consecutive hours. The moment he spikes a fever, the count begins anew.
3 - An ANC (absolute neutrophil count) of greater than 200. (Today's number was 88, so he appears to be making progress in this department.)
He also needs to look better overall and have manageable pain.
Thank you in advance for interceding and for helping us to fight this battle. We really need him home as soon as is possible, and I know that when we call upon the Lord, all things -- ALL THINGS -- are possible, even when situations seem most dire. Blessings.
Logan still has a highish fever, and is not feeling particularly well. In order for him to come home, we need the following things to come to pass:
1 - Negative blood cultures.
2 - No fever for 48 consecutive hours. The moment he spikes a fever, the count begins anew.
3 - An ANC (absolute neutrophil count) of greater than 200. (Today's number was 88, so he appears to be making progress in this department.)
He also needs to look better overall and have manageable pain.
Thank you in advance for interceding and for helping us to fight this battle. We really need him home as soon as is possible, and I know that when we call upon the Lord, all things -- ALL THINGS -- are possible, even when situations seem most dire. Blessings.
The Morning Report
It's Thursday morning, and Brady and I will be checking out of the hospital and heading home sometime soon.
Adam called his mom a little while ago for the morning update on Logan. As it turns out, one of his blood cultures came back positive. It's some sort of bacteria that hangs out around the mouth, and it somehow got into his system through one of his chemo port lumens. So our assumption is that Logan, who constantly picks at his lip until it bleeds, must've touched his lumen at some point, allowing the bacteria to enter his bloodstream. Now that they know what it is, they can give him a more specific antibiotic. He still has a fever that's being controlled by Tylenol, but spikes again once it wears off. Molly told Adam's mom to expect roughly one week in the hospital, but we'll see about that....
The bit of surprising... well, honestly, shocking... news was his white count: Apparently this morning it was .8. There are often miscalculations with smaller numbers like .1 and .2, but .8 is almost certainly not an error to that kind of degree. It may actually be .5 or .7, but there's almost zero chance that it's 0. So this means that his recovery is almost certainly beginning. On DAY 15. Truly amazing, amazing, amazing. So the prayers are, once again, working! Since white cells are essentially the building blocks for healing, please PLEASE pray that that number will continue to rise tomorrow so his body can fight off the infection and bring the fever down. Our assumption is that if he can get rid of the fever, we should be able to bring him home and administer the antibiotics ourselves. And that would be wonderful.
We still have a long several days in front of us, but thank you so much for working overtime to intercede on our behalf! Blessings.
Adam called his mom a little while ago for the morning update on Logan. As it turns out, one of his blood cultures came back positive. It's some sort of bacteria that hangs out around the mouth, and it somehow got into his system through one of his chemo port lumens. So our assumption is that Logan, who constantly picks at his lip until it bleeds, must've touched his lumen at some point, allowing the bacteria to enter his bloodstream. Now that they know what it is, they can give him a more specific antibiotic. He still has a fever that's being controlled by Tylenol, but spikes again once it wears off. Molly told Adam's mom to expect roughly one week in the hospital, but we'll see about that....
The bit of surprising... well, honestly, shocking... news was his white count: Apparently this morning it was .8. There are often miscalculations with smaller numbers like .1 and .2, but .8 is almost certainly not an error to that kind of degree. It may actually be .5 or .7, but there's almost zero chance that it's 0. So this means that his recovery is almost certainly beginning. On DAY 15. Truly amazing, amazing, amazing. So the prayers are, once again, working! Since white cells are essentially the building blocks for healing, please PLEASE pray that that number will continue to rise tomorrow so his body can fight off the infection and bring the fever down. Our assumption is that if he can get rid of the fever, we should be able to bring him home and administer the antibiotics ourselves. And that would be wonderful.
We still have a long several days in front of us, but thank you so much for working overtime to intercede on our behalf! Blessings.
Wednesday, December 15, 2010
Exhaustion
I've cried so many tears today that my eyes are nearly swollen shut and Heaven knows that I'm physically, mentally and emotionally exhausted, but I simply could not go to bed without posting one more time.
When I've asked for prayers for very specific things over the course of the past four months, they've been answered. I asked for recovery during the infamous cycle two, and it began not even 45 minutes later, much to everyone's surprise. I asked for Logan to be home on Thanksgiving, and although it wasn't exactly as I'd imagined, he was. I asked for Logan to be home for Brady's birth, and he was, even if once again, it wasn't as I'd wanted. I asked that he avoid fevers during cycle 3 and be home until the start of cycle 4, and he was. That all shows that God hears our prayers for my little sunshine.
So now I'm coming back to you again with yet more requests (and honestly, I could think of hundreds of requests, so I'm trying to pare down a bit) for the next 10 days. I've said before that I just want him home for Christmas, but given what's happened with respect to me failing to be specific enough, I want to expand on that: I want Logan to be home for Christmas long enough to actually enjoy the season a little. I want him to be able to have fun, to feel well and to enjoy the holiday with his family as any 4-year old boy should be able to do. So in short, please pray for healing if there's merely mucositis involved, and more healing if there's an infection at play. Pray against the fevers that are plaguing him (it was still 103 as of this evening). Pray for his energy level to rebound and his pain to dissipate. And pray for him to be able to join us all at home again very, very soon: Not at the last second of Christmas Eve, not on Christmas Day, but SOONer. I feel selfish and weird for asking for something so specific, but my heart cries out for it.
It's not that I want to be impatient with whatever it is that God is doing. It's that I want my child to be able to have fun this time of year. He loves Christmas and all of the stories and sparkles that go along with it, and he DESERVES to be able to celebrate them with his family, bar none. It breaks my heart to think of him at CHO on 12/25, particulary since if he were there, he'd be on contact precautions thanks to the fever, so he wouldn't be allowed to see any of his siblings. It would break all of their little hearts, and to be blunt, we've all suffered a bit too much heartache lately. I know God hears our prayers, and I want to be certain that this one goes up in droves. I'm not setting a date, per se, just asking that it be a few days before Christmas and that he feel well.
And as always, please continue to pray for complete and permanent healing of his cancer.
Thank you all and good night.
When I've asked for prayers for very specific things over the course of the past four months, they've been answered. I asked for recovery during the infamous cycle two, and it began not even 45 minutes later, much to everyone's surprise. I asked for Logan to be home on Thanksgiving, and although it wasn't exactly as I'd imagined, he was. I asked for Logan to be home for Brady's birth, and he was, even if once again, it wasn't as I'd wanted. I asked that he avoid fevers during cycle 3 and be home until the start of cycle 4, and he was. That all shows that God hears our prayers for my little sunshine.
So now I'm coming back to you again with yet more requests (and honestly, I could think of hundreds of requests, so I'm trying to pare down a bit) for the next 10 days. I've said before that I just want him home for Christmas, but given what's happened with respect to me failing to be specific enough, I want to expand on that: I want Logan to be home for Christmas long enough to actually enjoy the season a little. I want him to be able to have fun, to feel well and to enjoy the holiday with his family as any 4-year old boy should be able to do. So in short, please pray for healing if there's merely mucositis involved, and more healing if there's an infection at play. Pray against the fevers that are plaguing him (it was still 103 as of this evening). Pray for his energy level to rebound and his pain to dissipate. And pray for him to be able to join us all at home again very, very soon: Not at the last second of Christmas Eve, not on Christmas Day, but SOONer. I feel selfish and weird for asking for something so specific, but my heart cries out for it.
It's not that I want to be impatient with whatever it is that God is doing. It's that I want my child to be able to have fun this time of year. He loves Christmas and all of the stories and sparkles that go along with it, and he DESERVES to be able to celebrate them with his family, bar none. It breaks my heart to think of him at CHO on 12/25, particulary since if he were there, he'd be on contact precautions thanks to the fever, so he wouldn't be allowed to see any of his siblings. It would break all of their little hearts, and to be blunt, we've all suffered a bit too much heartache lately. I know God hears our prayers, and I want to be certain that this one goes up in droves. I'm not setting a date, per se, just asking that it be a few days before Christmas and that he feel well.
And as always, please continue to pray for complete and permanent healing of his cancer.
Thank you all and good night.
Feverish
I feel like my heart is a few inches from breaking. Molly called Adam this afternoon from CHO to tell him that Logan had spiked a fever... of 103. So he's officially stuck there until either he's afebrile for a few days and his pain level is under control, or his ANC recovers to 200. Last cycle, that happened on cycle day 20, cycle 2 it was day 23. I can't even explain how upset I am. I was so excited, so happy, so... well, lots of positive emotions... for the first time in a long while. And now... more fear. Fear about being alone with Abby, Isaac and Brady for a long while, fear about Logan not recovering in time for Christmas at home. On top of post-partum tiredness, it's almost more than I can take. I'd ask God why, but figure there's not a point. After all, why try to understand this one bit of the puzzle when the whole darn thing is so incomprehensible as it is? I feel like we get a tease of goodness, and then it's torn away again. I'm tired of this merry-go-round and wish we could just get off.
Torn
Today's been a Tale of Two Brothers.
One half of the tale is of health and well-being; the other, of tiredness and pain.
Despite being a bit fussy at times overnight, Brady is doing very well. He has the strongest need to suck of any of my babies, and as a result, was already 4 ounces over his birthweight as of midnight. No weight loss for this little guy. He's had some nice awake time and likes to look around the room. So that's the tale of health.
The other part of the tale revolves around Logan. Although he had a decent night, per reports, Adam's parents were unable to complete his blood draw this morning so they took him in to CHO to have it done there. His numbers looked good -- hemoglobin over 11, platelets at 62 -- and wouldn't have required transfusions, but apparently he didn't look good. The area on his cheek that fronts the ulcer inside his mouth is redder, and he complained about throat pain. So, he was given a dose of morphine and he's being admitted for observation, per Philippa. She was quick to tell Adam that he was afebrile (no fever -- but Adam's mom noted that it was 'elevated'), so if he looks better tomorrow he ought to be able to come home.
I'm so disappointed. And mad and frustrated. It's not that I'm assuming the worst -- that we're in for another long hospital stay at CHO. It's that it crushes me to watch Logan rebound a little and then suffer a lot, rebound a little and then suffer a lot. He's an awesome kid. He deserves awesome things. And I wish I could make it all better for him right now, but I can't.
We'll be checking out with Brady tomorrow, so of course life would be much less complicated if Logan could be discharged then as well. Please pray for better health and healing for his mouth and throat, and for effective pain control that we can administer at home, if need be.
I know this is merely another bump in the road designed to shake my faith, but it's disheartening to feel like Brady's birth timing was so perfect, only to have the situation change and make it feel so much LESS perfect just a day later.
One half of the tale is of health and well-being; the other, of tiredness and pain.
Despite being a bit fussy at times overnight, Brady is doing very well. He has the strongest need to suck of any of my babies, and as a result, was already 4 ounces over his birthweight as of midnight. No weight loss for this little guy. He's had some nice awake time and likes to look around the room. So that's the tale of health.
The other part of the tale revolves around Logan. Although he had a decent night, per reports, Adam's parents were unable to complete his blood draw this morning so they took him in to CHO to have it done there. His numbers looked good -- hemoglobin over 11, platelets at 62 -- and wouldn't have required transfusions, but apparently he didn't look good. The area on his cheek that fronts the ulcer inside his mouth is redder, and he complained about throat pain. So, he was given a dose of morphine and he's being admitted for observation, per Philippa. She was quick to tell Adam that he was afebrile (no fever -- but Adam's mom noted that it was 'elevated'), so if he looks better tomorrow he ought to be able to come home.
I'm so disappointed. And mad and frustrated. It's not that I'm assuming the worst -- that we're in for another long hospital stay at CHO. It's that it crushes me to watch Logan rebound a little and then suffer a lot, rebound a little and then suffer a lot. He's an awesome kid. He deserves awesome things. And I wish I could make it all better for him right now, but I can't.
We'll be checking out with Brady tomorrow, so of course life would be much less complicated if Logan could be discharged then as well. Please pray for better health and healing for his mouth and throat, and for effective pain control that we can administer at home, if need be.
I know this is merely another bump in the road designed to shake my faith, but it's disheartening to feel like Brady's birth timing was so perfect, only to have the situation change and make it feel so much LESS perfect just a day later.
Tuesday, December 14, 2010
...and Our Family Feels Complete.
Anyone not connected to me via Facebook or in real life has no idea, but today, our family came to what feels like completion with the birth of Brady Michael. That's right: All of that walking I did yesterday with Isaac seems to have done the trick!
I woke up at roughly 1:15 AM feeling a very mild but persistent squeezing sensation. Just at that moment, Logan cried out for Adam to help him use the restroom, so I knew that meant he'd be moving into the extra bed in Logan's room and out of ours for the duration of the night. I stayed up for a little while feeling the pressure and wondering if anything was going to happen, but it died out after 45 minutes, and I went back to sleep. A similiar thing happened the day that I ultimately went into labor with Isaac, so I figured that it would happen today, but much later in the day. Eh, wrong.
At 4, I woke up again, this time feeling more squeezing. It felt a little stronger, and I meandered into Logan's room, woke Adam and told him that I thought maybe something might be happening. He said to let him know when I knew for sure, and I wandered back to bed. It died out yet again after 20 minutes, so I lulled back to sleep. At 6, I woke up feeling definitive contractions: I knew I was in labor. Adam called his parents to come get Abby, Logan and Isaac while I took a shower and got dressed. Logan sat on my bed, cheerfully commenting on everything as it happened. (And let me tell you, that kid says some funny things. Adam told him that I'd lost my plug, and he told me that it was okay because I could just go downstairs and find another one, ha ha ha.) Shortly after I'd gotten dressed and thrown some things into a bag, I decided that there might not be enough time for his parents to arrive (it was raining combined with rush hour traffic on a freeway) so we called our neighbor Jen (thanks Shack!) to come over and stay with the kids in the interim. There was a small amount of drama when she didn't answer, and the two other folks we also tried also didn't answer, but it was all good in the end.
We got to the hospital at around 7 and I was admitted, definitely feeling a lot of pressure, but not necessarily what I would call pain. I almost immediately recognized Suzanne, my L&D nurse, from Isaac's birth, so that was kind of neat. I was proclaimed to be at about 7 cm, so I labored on from there. The on-call doctor, who delivered Isaac, came in at 8 and said that she was going to call my OB to see if he wanted to come in and deliver me, or if he wanted her to go ahead and do it herself. She came back shortly thereafter to say that he wanted to do it, and that he should be there in about a half hour. He broke my water at about 8:30, and then I lulled around in a vaguely painless/vaguely annoying state until I needed to push at around 9 or 9:10. I pushed for a little while, thinking to myself that it felt more difficult this go-round for some reason, and then there he was at 9:23 am.
Brady weighed in at 8 lbs 5 oz, so well-over former leaderboard topper Isaac's top weight of 7 lbs 10 oz. He's also 21 inches long. So far, he's been an excellent and enthusaistic nurser, which is an incredible blessing and I'm so grateful!
Adam's parents and Emily came by at 3:30 with all three kids -- including a masked Logan -- to visit. Logan was, as I'd expect, extremely sweet with Brady. He wanted to kiss his head and he spoke softly to him. He even asked who'd picked out the name (me, in case you're wondering) and said it was a good one. That's why he's my sunshine. Isaac was also very pleased with his baby brother, and was absolutely itching to get ahold of him, ha. Of course, that didn't happen in a direct sense, but he did get to gently touch him and he spent lots of time wriggling up next to whomever was doing the holding at any given moment. Abby was also happy, but in her usual understated way: I think the whole scene was a little crowded for her taste, so she hung back a bit.
But yes, to refer to my post title, our family does feel complete now. I remember the hours after Isaac's birth and how I felt as if I wasn't sure that we were done. My heart still wanted just one more. This time? I feel like my dream family is done. And of course, facing what we're facing with Logan, I fear losing my dream. So today, Brady's birthday, I ask once again for a continued, persistent stream of prayers to God asking for complete healing for my sweet one. He's such an incredibly integral part of our family... I don't even have the words to describe how very essential he is -- and Adam, Abby, Isaac and now Brady are -- to our little family. He's a key piece of the puzzle, and I just love him -- and all of my babies -- so much.
Good evening to you, and blessings to your family.
I woke up at roughly 1:15 AM feeling a very mild but persistent squeezing sensation. Just at that moment, Logan cried out for Adam to help him use the restroom, so I knew that meant he'd be moving into the extra bed in Logan's room and out of ours for the duration of the night. I stayed up for a little while feeling the pressure and wondering if anything was going to happen, but it died out after 45 minutes, and I went back to sleep. A similiar thing happened the day that I ultimately went into labor with Isaac, so I figured that it would happen today, but much later in the day. Eh, wrong.
At 4, I woke up again, this time feeling more squeezing. It felt a little stronger, and I meandered into Logan's room, woke Adam and told him that I thought maybe something might be happening. He said to let him know when I knew for sure, and I wandered back to bed. It died out yet again after 20 minutes, so I lulled back to sleep. At 6, I woke up feeling definitive contractions: I knew I was in labor. Adam called his parents to come get Abby, Logan and Isaac while I took a shower and got dressed. Logan sat on my bed, cheerfully commenting on everything as it happened. (And let me tell you, that kid says some funny things. Adam told him that I'd lost my plug, and he told me that it was okay because I could just go downstairs and find another one, ha ha ha.) Shortly after I'd gotten dressed and thrown some things into a bag, I decided that there might not be enough time for his parents to arrive (it was raining combined with rush hour traffic on a freeway) so we called our neighbor Jen (thanks Shack!) to come over and stay with the kids in the interim. There was a small amount of drama when she didn't answer, and the two other folks we also tried also didn't answer, but it was all good in the end.
We got to the hospital at around 7 and I was admitted, definitely feeling a lot of pressure, but not necessarily what I would call pain. I almost immediately recognized Suzanne, my L&D nurse, from Isaac's birth, so that was kind of neat. I was proclaimed to be at about 7 cm, so I labored on from there. The on-call doctor, who delivered Isaac, came in at 8 and said that she was going to call my OB to see if he wanted to come in and deliver me, or if he wanted her to go ahead and do it herself. She came back shortly thereafter to say that he wanted to do it, and that he should be there in about a half hour. He broke my water at about 8:30, and then I lulled around in a vaguely painless/vaguely annoying state until I needed to push at around 9 or 9:10. I pushed for a little while, thinking to myself that it felt more difficult this go-round for some reason, and then there he was at 9:23 am.
Brady weighed in at 8 lbs 5 oz, so well-over former leaderboard topper Isaac's top weight of 7 lbs 10 oz. He's also 21 inches long. So far, he's been an excellent and enthusaistic nurser, which is an incredible blessing and I'm so grateful!
Adam's parents and Emily came by at 3:30 with all three kids -- including a masked Logan -- to visit. Logan was, as I'd expect, extremely sweet with Brady. He wanted to kiss his head and he spoke softly to him. He even asked who'd picked out the name (me, in case you're wondering) and said it was a good one. That's why he's my sunshine. Isaac was also very pleased with his baby brother, and was absolutely itching to get ahold of him, ha. Of course, that didn't happen in a direct sense, but he did get to gently touch him and he spent lots of time wriggling up next to whomever was doing the holding at any given moment. Abby was also happy, but in her usual understated way: I think the whole scene was a little crowded for her taste, so she hung back a bit.
But yes, to refer to my post title, our family does feel complete now. I remember the hours after Isaac's birth and how I felt as if I wasn't sure that we were done. My heart still wanted just one more. This time? I feel like my dream family is done. And of course, facing what we're facing with Logan, I fear losing my dream. So today, Brady's birthday, I ask once again for a continued, persistent stream of prayers to God asking for complete healing for my sweet one. He's such an incredibly integral part of our family... I don't even have the words to describe how very essential he is -- and Adam, Abby, Isaac and now Brady are -- to our little family. He's a key piece of the puzzle, and I just love him -- and all of my babies -- so much.
Good evening to you, and blessings to your family.
Monday, December 13, 2010
A Good Day
It's been a good Monday.
As mentioned earlier, Adam took Logan to CHO for his platelet transfusion early this morning, which turned into a platelet-and-blood transfusion (as I'd guessed it might). His platelets finally dropped like a rock to 9, and his HGB was 7.9 so they decided to tank him up with both so we won't have to return tomorrow. The doctor who looked at him agreed that the white spot in his mouth looks like a mucositis-like ulcer, but also said it doesn't seem infected, which is good. He's still there receiving his blood as I type; things got off to a slow start because the bank was out of platelets, so they had to retrieve them from another location, irradiate them, and so on to get them ready for use. Which handily brings me back around to my usual plea of late: If you can, please donate blood and or platelets! It's sick season, and kids like Logan (and adults!) need them.
Anyway, his mood today is MUCH improved, per the conversations we've had over the phone throughout the day. The spunk is back in his voice, and he's spent some time in dictator-mode, which while annoying, also makes us laugh because it means he's feeling good enough to be bossy. Praise to God for that, as odd as it seems! Apparently he's been well-spoiled there today; the pheresis nurse, Nadine, brought him a dinosaur game, Philippa dropped off what sounds like a pretty comprehensive art kit, and Molly came by for a visit. (And Logan always likes a good Molly-visit!)
Meanwhile, Isaac and I took the chance to do a little one on one shopping. We hit Target (where I saw Emily, an old playgroup friend), The Dollar Store and the mall. I'd hoped to get some contractionating going, but no dice: Nary a ONE. I opted to find solace in a decaf peppermint mocha. It worked a little. :) Isaac seemed very amused to be out alone with mommy, having lunch at McD's: He ate every bite of his food, to my surprise, and made eyes at me the entire time. I hope he's ready to relinquish his baby-throne.
So that's our day. Adam said that he and Logan would be leaving the day hospital at closing time, 5:30, which will allow him to receive just about his entire transfusion. Definitely makes for a long day, but at least it's a day to sing praises over instead of one that's trying.
Thank you ALL for your prayers and please continue passing on the word! Prayers are amazing, amazing things: Sweet nectar to God's ears. (I know that's corny, but it just came to me so I had to type it.) Happy evening.
As mentioned earlier, Adam took Logan to CHO for his platelet transfusion early this morning, which turned into a platelet-and-blood transfusion (as I'd guessed it might). His platelets finally dropped like a rock to 9, and his HGB was 7.9 so they decided to tank him up with both so we won't have to return tomorrow. The doctor who looked at him agreed that the white spot in his mouth looks like a mucositis-like ulcer, but also said it doesn't seem infected, which is good. He's still there receiving his blood as I type; things got off to a slow start because the bank was out of platelets, so they had to retrieve them from another location, irradiate them, and so on to get them ready for use. Which handily brings me back around to my usual plea of late: If you can, please donate blood and or platelets! It's sick season, and kids like Logan (and adults!) need them.
Anyway, his mood today is MUCH improved, per the conversations we've had over the phone throughout the day. The spunk is back in his voice, and he's spent some time in dictator-mode, which while annoying, also makes us laugh because it means he's feeling good enough to be bossy. Praise to God for that, as odd as it seems! Apparently he's been well-spoiled there today; the pheresis nurse, Nadine, brought him a dinosaur game, Philippa dropped off what sounds like a pretty comprehensive art kit, and Molly came by for a visit. (And Logan always likes a good Molly-visit!)
Meanwhile, Isaac and I took the chance to do a little one on one shopping. We hit Target (where I saw Emily, an old playgroup friend), The Dollar Store and the mall. I'd hoped to get some contractionating going, but no dice: Nary a ONE. I opted to find solace in a decaf peppermint mocha. It worked a little. :) Isaac seemed very amused to be out alone with mommy, having lunch at McD's: He ate every bite of his food, to my surprise, and made eyes at me the entire time. I hope he's ready to relinquish his baby-throne.
So that's our day. Adam said that he and Logan would be leaving the day hospital at closing time, 5:30, which will allow him to receive just about his entire transfusion. Definitely makes for a long day, but at least it's a day to sing praises over instead of one that's trying.
Thank you ALL for your prayers and please continue passing on the word! Prayers are amazing, amazing things: Sweet nectar to God's ears. (I know that's corny, but it just came to me so I had to type it.) Happy evening.
Monday Morning
Still here at home, still holding our collective breath. Logan made it through the weekend without spiking a fever, although he was clearly uncomfortable on Friday and Saturday. He had a rather icky-looking plaque-y white spot inside his right cheek (in the very location where he'd bitten the inside of his mouth Thursday evening) and wouldn't open up particularly wide so I could take a good look. We filled a prescription for Tylenol with Codeine and gave him a single dose, which effectively knocked him out. (And ostensibly, helped with the discomfort.)
Yesterday was marginally better. I took all three kids up to Adam's parents' house so we could help decorate their Christmas tree while Adam dropped off his blood at CHO and joined us a little later. We'd expected him to need platelets -- after all, his number had held steady at 67 on both Thursday and Friday so we'd guessed a big drop had happened on Saturday, since we didn't do a draw that day and since that has, historically, been what's happened. But nope: Surprisingly, the number sat at 45. Although that's 5 below the lower limit for Headstart Protocol kids with mucositis, the doctor on-call said we could hold off on a transfusion 'until mid-week'.
Adam and I gave each other a look over that one; we knew that Philippa would see the number this morning and immediately schedule Logan to come in. And we were right. She called right at 8:30 -- the start of her workday -- to say she had a space in the day hospital and that he should come in ASAP this morning for a blood draw and transfusion: Either just platelets, or platelets as well as blood. I'm guessing he'll need the blood, but we'll see. Hopefully and prayerfully, his temperature will stay down and he'll be back this afternoon. He ate a few bites of his bagel with cream cheese before asking for a bowl of cinnamon spice oatmeal. We've implemented a 'two main course food item' rule for meals in order to avoid a repeat of last cycle's '5 dinner' night. He ate roughly half of the oatmeal before complaining that the spot inside his cheek hurt. He told me to go get my flashlight and opened his mouth really, really wide. I knew from just that action that despite what it looked like and his claims, it definitely felt better. Prior to this morning, he hadn't wanted anyone to touch it and certainly hadn't opened his mouth wide and used his own finger to pull the cheek aside for me as he did this morning.
In terms of attitude and energy level, he's much improved today. Still whiny, but he didn't trip over his feet while walking or complain that his legs were too tired to do anything. And he showed distinctive moments of good cheer, uttering the word 'bagel' in his native pretend Ponow language and then giggling over the humor.
As for me, I'm more than eagerly awaiting #4's arrival. I'm done, done, done. I've gotten to the point that I can't sit up completely, I can't lie down and I feel sick all the time from the pressure on my stomach. He needs to decide to come out SOON or I'm going to go ahead and pick an eviction date. It's not my preference to do so, but we'd like some stability and predictability as we approach Christmas Day. With so many things up in the air it would be nice to just have little boy out.
So that's it for this morning. Thank you so much for your continued prayers, especially with all that we have coming soon: Baby, Christmas, the second -- and extraordinarily important -- MRI. They mean everything.
Yesterday was marginally better. I took all three kids up to Adam's parents' house so we could help decorate their Christmas tree while Adam dropped off his blood at CHO and joined us a little later. We'd expected him to need platelets -- after all, his number had held steady at 67 on both Thursday and Friday so we'd guessed a big drop had happened on Saturday, since we didn't do a draw that day and since that has, historically, been what's happened. But nope: Surprisingly, the number sat at 45. Although that's 5 below the lower limit for Headstart Protocol kids with mucositis, the doctor on-call said we could hold off on a transfusion 'until mid-week'.
Adam and I gave each other a look over that one; we knew that Philippa would see the number this morning and immediately schedule Logan to come in. And we were right. She called right at 8:30 -- the start of her workday -- to say she had a space in the day hospital and that he should come in ASAP this morning for a blood draw and transfusion: Either just platelets, or platelets as well as blood. I'm guessing he'll need the blood, but we'll see. Hopefully and prayerfully, his temperature will stay down and he'll be back this afternoon. He ate a few bites of his bagel with cream cheese before asking for a bowl of cinnamon spice oatmeal. We've implemented a 'two main course food item' rule for meals in order to avoid a repeat of last cycle's '5 dinner' night. He ate roughly half of the oatmeal before complaining that the spot inside his cheek hurt. He told me to go get my flashlight and opened his mouth really, really wide. I knew from just that action that despite what it looked like and his claims, it definitely felt better. Prior to this morning, he hadn't wanted anyone to touch it and certainly hadn't opened his mouth wide and used his own finger to pull the cheek aside for me as he did this morning.
In terms of attitude and energy level, he's much improved today. Still whiny, but he didn't trip over his feet while walking or complain that his legs were too tired to do anything. And he showed distinctive moments of good cheer, uttering the word 'bagel' in his native pretend Ponow language and then giggling over the humor.
As for me, I'm more than eagerly awaiting #4's arrival. I'm done, done, done. I've gotten to the point that I can't sit up completely, I can't lie down and I feel sick all the time from the pressure on my stomach. He needs to decide to come out SOON or I'm going to go ahead and pick an eviction date. It's not my preference to do so, but we'd like some stability and predictability as we approach Christmas Day. With so many things up in the air it would be nice to just have little boy out.
So that's it for this morning. Thank you so much for your continued prayers, especially with all that we have coming soon: Baby, Christmas, the second -- and extraordinarily important -- MRI. They mean everything.
Sunday, December 12, 2010
Morning Glory
After what seemed to have been a much-improved night (and I say it that way because I wasn't the one in the room with Logan; as a self-respecting preggo, I was beached in my own bed, trying to eke out as much sleep as possible before the baby comes), there's peace this morning at our house. His mood is improved, he's talking more and just seems to be in a somewhat better spirits overall. There's still a healthy amount of crank involved and he's not 'Logan', but he's a better version of Chemo Kid, if that makes sense. (As an example, just a moment ago, I overheard him discussing the morning's plan with Adam. Adam said I'd be taking the kids to grandma's house while he'd be taking the blood to CHO. Logan said -- with more aggression that I've heard in his voice in a few days -- but you're NOT going to the hospital. You're going to the LAB. and then insisted that Adam confirm his claim.) He managed to avoid a fever once again, and although he's still coming close to that magic number at times, he's still below it for now. So thank you for your prayers and thank GOD for hearing us all.
It's almost a certainty that he'll need a transfusion of some sort this afternoon once his bloodwork comes back. Just looking at him, my guess is that platelets will be in order, and maybe hemoglobin, but he's not nearly as pale and his lips aren't as white as they typically get when the number is really low. So we'll see.
Since we're commanded to share when God does things for us and to revel in the joy that results, that's what I'm doing here. I don't know what the rest of the day holds, but am grateful for a little bit of morning glory.
It's almost a certainty that he'll need a transfusion of some sort this afternoon once his bloodwork comes back. Just looking at him, my guess is that platelets will be in order, and maybe hemoglobin, but he's not nearly as pale and his lips aren't as white as they typically get when the number is really low. So we'll see.
Since we're commanded to share when God does things for us and to revel in the joy that results, that's what I'm doing here. I don't know what the rest of the day holds, but am grateful for a little bit of morning glory.
Saturday, December 11, 2010
Circling the Wagons, Rallying the Troops
For some reason I can't explain, I feel compelled to once again rally Logan's troops in 'official' capacity. I know you're all praying and have been, but I just feel a renewed vigor to send up as many prayers as possible on behalf of my sunshine. Nothing new, nothing surprising or unusual, merely a sense that we could use some extra heavenly help. I'm sure I seem like a crazed mom at times, but I continue to believe that prayers can rock the world, and I want that for my son so much more than I can even express in words. I want to be able to look back a year from now, two years from now, five years from now and think 'wow, look at how that horrible situation was redeemed!'
Thank you and have a great rest of the weekend.
Thank you and have a great rest of the weekend.
12/11/10
12/11/10. A pretty cool birthdate, if you ask me, but methinks it won't belong to our baby. I took Abby out this morning for some girl time and to do a little shopping. She's complained lately that she doesn't have enough long-sleeved shirts, which has led to her wearing the now-near midriff-baring short-sleeved shirts of these recently passed Spring and Summer months, which in turn has me worried that people who see her at school will think we don't have money to buy her clothes! Totally not true -- just no time. :) So off we went, and we were able to replenish her supply with appropriately sized shirts (she's somewhere between a 6x and a 7, if you're wondering, which is something of a pain: At her 6-year well check-up this past week, she was once again in the 95th percentile for height -- and 80th for weight -- so plain old 6s tend to be on the small side yet 7s are a bit big. Oh well: If only that were our biggest problem). She also picked out Christmas presents for Isaac and Logan, so another item checked off our to-do list.
To my point, even after being on my feet for a few hours and stooping to dig through ground-level bins for that perfectly-sized pair of Lightning McQueen pajamas for Logan, nary a contraction. Adam got Taco Bell for lunch, which sent me into labor with Isaac, but no dice for that this time, either. I know, I know: He'll come and soon. But when Adam told me this morning that I looked 'bloated', it was a startling and depressing realization for me to absorb. He was quick to add that I didn't look fat, per se, but it still stung a bit. I'm used to being thin. I like being thin.
As for Logan, I'm not sure what the next day will bring, but I woke up this morning feeling a surprising amount of peace over the whole situation. He absolutely, 100% has mucositis. And he absolutely, 100% is neutropenic and has no white cells to help him get over it. That methotrexate is such a double-edged blade: It's necessary to treat his tumor and it needs to stay in his system for so long in order to be effective, but at the same time, if it sticks around for even a few hours TOO long, it does so much damage. His lower lip, which he picks at incessantly by nature, is split open and swollen. He also has a nasty white patch just inside his lip, which may well be the result of him biting the inside of his cheek the night he came home. He's also complained that his throat hurts. Adam called the on-call doctor, who prescribed some Tylenol with codeine in an attempt to let us keep him at home. We're supposed to give it to him less often than prescribed, take his temperature during the off-times, and as long as he doesn't wind up with a fever and is reasonably comfortable, he can stay home. If he spikes a fever, it's back to CHO. He really doesn't want to go back, so he lied about the pain earlier today when we asked, even though the discomfort was written all over his face in the form of a wrinkled brow, drawn lips and squinted eyes. It really does break me, over and over again.
Anyway, please pray that by some miracle, he'll be able to avoid a fever, recovery will come earlier than expected, and we'll be able to keep him comfortable with the new medication. If that doesn't come to pass, please pray that he'll be released again a few days before Christmas feeling much more himself. He's such a holiday-loving kid that it would crush him to be away when the fun was happening. The earlier recovery is really essential, since he needs white blood cells in order to heal the mucositis sores. So please, please make that a priority.
Thank you for your continued prayers. Love to you all.
To my point, even after being on my feet for a few hours and stooping to dig through ground-level bins for that perfectly-sized pair of Lightning McQueen pajamas for Logan, nary a contraction. Adam got Taco Bell for lunch, which sent me into labor with Isaac, but no dice for that this time, either. I know, I know: He'll come and soon. But when Adam told me this morning that I looked 'bloated', it was a startling and depressing realization for me to absorb. He was quick to add that I didn't look fat, per se, but it still stung a bit. I'm used to being thin. I like being thin.
As for Logan, I'm not sure what the next day will bring, but I woke up this morning feeling a surprising amount of peace over the whole situation. He absolutely, 100% has mucositis. And he absolutely, 100% is neutropenic and has no white cells to help him get over it. That methotrexate is such a double-edged blade: It's necessary to treat his tumor and it needs to stay in his system for so long in order to be effective, but at the same time, if it sticks around for even a few hours TOO long, it does so much damage. His lower lip, which he picks at incessantly by nature, is split open and swollen. He also has a nasty white patch just inside his lip, which may well be the result of him biting the inside of his cheek the night he came home. He's also complained that his throat hurts. Adam called the on-call doctor, who prescribed some Tylenol with codeine in an attempt to let us keep him at home. We're supposed to give it to him less often than prescribed, take his temperature during the off-times, and as long as he doesn't wind up with a fever and is reasonably comfortable, he can stay home. If he spikes a fever, it's back to CHO. He really doesn't want to go back, so he lied about the pain earlier today when we asked, even though the discomfort was written all over his face in the form of a wrinkled brow, drawn lips and squinted eyes. It really does break me, over and over again.
Anyway, please pray that by some miracle, he'll be able to avoid a fever, recovery will come earlier than expected, and we'll be able to keep him comfortable with the new medication. If that doesn't come to pass, please pray that he'll be released again a few days before Christmas feeling much more himself. He's such a holiday-loving kid that it would crush him to be away when the fun was happening. The earlier recovery is really essential, since he needs white blood cells in order to heal the mucositis sores. So please, please make that a priority.
Thank you for your continued prayers. Love to you all.
Friday, December 10, 2010
Torture.
I could call this whole experience something less dramatic, but it wouldn't be true to how it feels because watching Logan go through this process is torture, pure and simple. My heart feels so twisted, so broken, so shattered that I wonder how I'll ever get beyond it all.
Today wasn't a good day. Although per his morning bloodwork, his numbers held steady from yesterday so he didn't need any transfusions, he really struggled with tummy and throat pain. The bright, energetic little boy who'd returned to us earlier this week is gone once again, replaced instead by his Chemo Twin: The sunken-eyed, tired, crying soul that we'd seen in the past.
It crushed me today every time I saw him wince upon swallowing. Every time he pulled his legs up to his chest and cried that his tummy hurt. When I had to hold him down so Adam could give him his GCSF shot this evening, it was like a knife to my gut. And just minutes ago, when I tried to talk to him and got no response, and then when he asked me to go away because he didn't want to cuddle, gunshots to my... everything.
I know that part of my role here as 'The Mother' is to step back and realize that there are ups and downs with every experience I've had and will have as a parent. There are and will continue to be sweet, good times, but there are also hard times in the now and to come that will absolutely break my heart. Somehow, I didn't really expect to have to deal with the latter until my children were teenagers. Watching a sweet-natured 4-year old suffer to this kind of degree is painful beyond measure. And if I'm being honest -- really, really honest -- it makes me look at God cock-eyed. Again. Come on: There are disgusting child molesters, killers, just plain mean-spirited people out there who get perfectly healthy bodies, in a physical sense. But my little darling, who is truly one of the sweetest, kindest people I know, is saddled with this crap. I know that life isn't fair and that suffering across the board is uneven from one to the next, but come on.
I also know how easy it is to judge me for saying that. After the amazing things she's seen, she's still questioning the goodness of God? Come on now! In defense of myself, it's not that I think the Amazing Things milk train has run out of gas or left the station; I think there are still more amazing things to come. My heart needs, wants and believes in them (much of the time, anyway). But the down days, the sick days, the ones when I can feel his suffering are just so hard to handle, so hard to swallow, so hard to cope with that it can be hard to keep any faith at all.
In terms of the technical stuff, Philippa said today when I spoke with her that he doesn't need to check back into the hospital unless he spikes a fever or we can't manage his pain level at home, so mucocitis isn't the automatic ticket back that we'd assumed it was. She said we could call in for a prescription for Tylenol with codeine to see if that would help; we'd just need to take his temp first and then give it to him. So that was encouraging, even if it makes me sad to think that he's been hit with that awful, painful mouth and throat pain all over again. If it could only be me instead.
Meanwhile, from a comfort perspective, I want this baby out. Soon. I've gained so much weight, am so puffy and am so horribly uncomfortable that I just want to have him and move on with figuring out the details post-birth. I don't want to be saddled with a longer labor; the birthing process is really the easiest part of pregnancy for me (by far, actually), so a long labor would be so disappointing on so many levels, given the context of the entire latter half of this year.
Anyway, Logan needs prayers for a quick recovery from mucocitis (since I'm pretty sure he has it), resistance to fevers and increased energy. My spirit feels like it's breaking -- though not yet broken, per se -- so I need lots of help with that.
Thank you as always for walking this path along with us.
Today wasn't a good day. Although per his morning bloodwork, his numbers held steady from yesterday so he didn't need any transfusions, he really struggled with tummy and throat pain. The bright, energetic little boy who'd returned to us earlier this week is gone once again, replaced instead by his Chemo Twin: The sunken-eyed, tired, crying soul that we'd seen in the past.
It crushed me today every time I saw him wince upon swallowing. Every time he pulled his legs up to his chest and cried that his tummy hurt. When I had to hold him down so Adam could give him his GCSF shot this evening, it was like a knife to my gut. And just minutes ago, when I tried to talk to him and got no response, and then when he asked me to go away because he didn't want to cuddle, gunshots to my... everything.
I know that part of my role here as 'The Mother' is to step back and realize that there are ups and downs with every experience I've had and will have as a parent. There are and will continue to be sweet, good times, but there are also hard times in the now and to come that will absolutely break my heart. Somehow, I didn't really expect to have to deal with the latter until my children were teenagers. Watching a sweet-natured 4-year old suffer to this kind of degree is painful beyond measure. And if I'm being honest -- really, really honest -- it makes me look at God cock-eyed. Again. Come on: There are disgusting child molesters, killers, just plain mean-spirited people out there who get perfectly healthy bodies, in a physical sense. But my little darling, who is truly one of the sweetest, kindest people I know, is saddled with this crap. I know that life isn't fair and that suffering across the board is uneven from one to the next, but come on.
I also know how easy it is to judge me for saying that. After the amazing things she's seen, she's still questioning the goodness of God? Come on now! In defense of myself, it's not that I think the Amazing Things milk train has run out of gas or left the station; I think there are still more amazing things to come. My heart needs, wants and believes in them (much of the time, anyway). But the down days, the sick days, the ones when I can feel his suffering are just so hard to handle, so hard to swallow, so hard to cope with that it can be hard to keep any faith at all.
In terms of the technical stuff, Philippa said today when I spoke with her that he doesn't need to check back into the hospital unless he spikes a fever or we can't manage his pain level at home, so mucocitis isn't the automatic ticket back that we'd assumed it was. She said we could call in for a prescription for Tylenol with codeine to see if that would help; we'd just need to take his temp first and then give it to him. So that was encouraging, even if it makes me sad to think that he's been hit with that awful, painful mouth and throat pain all over again. If it could only be me instead.
Meanwhile, from a comfort perspective, I want this baby out. Soon. I've gained so much weight, am so puffy and am so horribly uncomfortable that I just want to have him and move on with figuring out the details post-birth. I don't want to be saddled with a longer labor; the birthing process is really the easiest part of pregnancy for me (by far, actually), so a long labor would be so disappointing on so many levels, given the context of the entire latter half of this year.
Anyway, Logan needs prayers for a quick recovery from mucocitis (since I'm pretty sure he has it), resistance to fevers and increased energy. My spirit feels like it's breaking -- though not yet broken, per se -- so I need lots of help with that.
Thank you as always for walking this path along with us.
Friday Morning
Please pray for Logan this morning. He was up much of the night throwing up, which I feel awful about since it was really our fault: Neither of us gave him his evening dose of Zofran, and he clearly needs it at this point. He can't go from around-the-clock nausea control to nothing at all. This morning he's been cranky, tired and whiney, a far cry from the bouncing, cheerful little guy who ran around the ward celebrating last night when the found out he was going to be allowed to go home. There's no fever yet, but I know Adam and I are both worried that he's going to develop mucositis. The extra day and half that it took him to clear the Methotrexate has the power to truly bring about havoc, and at this point, we desperately need things to stay as 'normal' and static as possible. We're now 13 days from my due date, 15 days from Christmas, and we really, really need miracles in order to make it from one day to the next. Another extended stay at CHO -- which would be likely, almost a given if he develops mucositis -- would do a tremendous amount of damage to so, so many aspects of our holiday season. And not just in an 'I don't like it this way' kind of way; in an 'I really don't know how we're going to get through it' kind of way. Sure, we'll deal with it, but honestly, at this point, I feel like we deserve a little better. I hope that doesn't sound selfish, even though that's precisely what it is. I've already abandoned my plans and dreams for this season, so all I want now is peace, my family together for the baby's birth and Christmas under one roof (and hopefully not the roof of CHO).
Thanks for your prayers.
Thanks for your prayers.
Thursday, December 9, 2010
The Logan Update: 12/9/10
Good day overall here, I'd say. Logan's methotrexate level was still too high to be discharged this morning (.13), but the doctor agreed to re-draw the lab at 4 PM to see if it would fall below the .1 marker. Since we were in something of a limbo land with respect to whether or not he'd be coming home in the evening, Adam stuck around CHO and worked in the cafeteria while I stayed with Logan.
He was a little on the lower energy side for the first part of my shift. He wound up falling asleep shortly after Adam left and was very, very cranky when he woke up to use the bathroom and again a little while later for no apparent reason at all. The third wake-up was the charm; I offered him some apple juice, which he accepted, and then he asked what he could have to eat. Thus began his quest to sample bits and pieces of the lunch he'd ordered earlier but not eaten: Strawberry yogurt, white bread, a hot dog, carrot sticks, Cheerios. He polished off the carrots in good order, and had bits and pieces of everything else. The food increased his energy level and he was soon ready to talk and wander again. Of course, he was also receiving a hemoglobin transfusion, too, so that probably helped with the overall mood a bit.
I headed back home at 4:40 to relieve Adam's mom, and Logan himself called at around 6 to tell me the news: I GET TO COME HOME TONIGHT! Yes, he literally shouted it into my ear. Adam said he was so excited when his nurse came in and told him he could leave -- he immediately said Yay, I get to see Abby and Isaac! His number fell to .08, good enough to get out for now. Of course, in order to stay out, he'll need to avoid mucusitis and a fever. So please pray over those! Philippa was very impressed that he managed to stay out of CHO for as long as he did last cycle, since it happens so rarely. We've love a repeat.
Abby was very excited that he was coming home and wanted to run out to the store to buy him a present. Instead, we settled for running out to Arby's to buy dinner and she and Isaac worked to line up 40 or 50 cars near the door so he'd see them when he came in. (He did, and he was impressed.) Earlier in the day, she'd also cleaned up his room (shocking; when I saw it I realized JUST how much she misses him) and written him the sweetest welcome home note.
When Adam and Logan got here, Logan got to see our outside Christmas lights for the first time, and I was so taken with his response. He just stood underneath the tree and breathed it's so beautiful over and over again, total wonder in his eyes. That's part of what this time of year is all about. It's such a Logan kind of reaction to have in the first place; I was sad wondering how many times in the past I'd missed that kind of reaction from him, but also grateful that I was able to fully absord it this time.
In nitty gritty land, it's likely that he'll need platelets tomorrow, as today's number was only 69. Hopefully the blood he received today will last him through the weekend before he'll need to return for more.
Finally (and I'm sorry this is such a disjointed entry!), we have a schedule change to note. His next MRI, which was initially scheduled for 1/4 and will look at both his brain as well as his spinal column, has been moved up a week to 12/28. Philippa noted that since the results of the MRI are so crucial with respect to our next move, it made sense to make it happen sooner. So what are the potential next steps, you ask? There are a few. If there's NO sign of any disease remaining, we could skip cycle 5 and go straight to the transplant cycle. If there's operable disease remaining, he'll have another surgical resection to get it out and move forward from there. If it still looks like cycle 5 would be a good idea, he'll do that. I'm edgy over what's to come, and obviously my prayer is for option one -- NO disease remaining so a direct shot to the transplant cycle.
Thank you as always for your continued prayers. I keep envisioning the chemo drugs and God's hand crushing the cancer cells into nothingness and although I'm nervous, I'm also hopeful. Blessings to you all.
He was a little on the lower energy side for the first part of my shift. He wound up falling asleep shortly after Adam left and was very, very cranky when he woke up to use the bathroom and again a little while later for no apparent reason at all. The third wake-up was the charm; I offered him some apple juice, which he accepted, and then he asked what he could have to eat. Thus began his quest to sample bits and pieces of the lunch he'd ordered earlier but not eaten: Strawberry yogurt, white bread, a hot dog, carrot sticks, Cheerios. He polished off the carrots in good order, and had bits and pieces of everything else. The food increased his energy level and he was soon ready to talk and wander again. Of course, he was also receiving a hemoglobin transfusion, too, so that probably helped with the overall mood a bit.
I headed back home at 4:40 to relieve Adam's mom, and Logan himself called at around 6 to tell me the news: I GET TO COME HOME TONIGHT! Yes, he literally shouted it into my ear. Adam said he was so excited when his nurse came in and told him he could leave -- he immediately said Yay, I get to see Abby and Isaac! His number fell to .08, good enough to get out for now. Of course, in order to stay out, he'll need to avoid mucusitis and a fever. So please pray over those! Philippa was very impressed that he managed to stay out of CHO for as long as he did last cycle, since it happens so rarely. We've love a repeat.
Abby was very excited that he was coming home and wanted to run out to the store to buy him a present. Instead, we settled for running out to Arby's to buy dinner and she and Isaac worked to line up 40 or 50 cars near the door so he'd see them when he came in. (He did, and he was impressed.) Earlier in the day, she'd also cleaned up his room (shocking; when I saw it I realized JUST how much she misses him) and written him the sweetest welcome home note.
When Adam and Logan got here, Logan got to see our outside Christmas lights for the first time, and I was so taken with his response. He just stood underneath the tree and breathed it's so beautiful over and over again, total wonder in his eyes. That's part of what this time of year is all about. It's such a Logan kind of reaction to have in the first place; I was sad wondering how many times in the past I'd missed that kind of reaction from him, but also grateful that I was able to fully absord it this time.
In nitty gritty land, it's likely that he'll need platelets tomorrow, as today's number was only 69. Hopefully the blood he received today will last him through the weekend before he'll need to return for more.
Finally (and I'm sorry this is such a disjointed entry!), we have a schedule change to note. His next MRI, which was initially scheduled for 1/4 and will look at both his brain as well as his spinal column, has been moved up a week to 12/28. Philippa noted that since the results of the MRI are so crucial with respect to our next move, it made sense to make it happen sooner. So what are the potential next steps, you ask? There are a few. If there's NO sign of any disease remaining, we could skip cycle 5 and go straight to the transplant cycle. If there's operable disease remaining, he'll have another surgical resection to get it out and move forward from there. If it still looks like cycle 5 would be a good idea, he'll do that. I'm edgy over what's to come, and obviously my prayer is for option one -- NO disease remaining so a direct shot to the transplant cycle.
Thank you as always for your continued prayers. I keep envisioning the chemo drugs and God's hand crushing the cancer cells into nothingness and although I'm nervous, I'm also hopeful. Blessings to you all.
Wednesday, December 8, 2010
Hello, Predictability? It's Me Again.
I'll let you in on a little something about me: I can be pretty predictable and boring. Like I knew yesterday that if Logan didn't clear his Methotrexate this morning, I'd be disappointed. Sad. Down. And despite my best intentions to say it ain't so, no can do: I spent the day feeling all of those negative emotions. They came and went like waves, rushing in and out of my heart and effectively wearing away at my faith. I started to feel the old sense of bitterness again -- the whys and the frustrations. Why am I so negative? I often wonder.
Well, in this case at least, there's a good precedent for worry. We've seen and trudged through the valley of the low-lows. Round 2 haunts me even now, despite the awesome success that was round 3 and the promise Logan has shown so far during round 4. There's no reason to believe that he won't clear his Meth soon and be able to come home again.
But I confess that fear has entrenched itself in my heart and I'm having a hard time believing that this will all have a good outcome. I want to believe. I want to have the faith that people like my grandma (hi grandma) have about all of this. But I'm just so... worried. Scared. Stressed. Afraid. All of those things that are natural for me to feel, but not at all productive or helpful. I looked Logan's pony pictures from preschool last year and instead of allowing them to make me smile, they made me cry.
I need to re-focus, uproot the fear, re-set my eyes on the prize, and be hopeful again. I just need a little kick to get it done. Easy enough, right? Not really.
Well, in this case at least, there's a good precedent for worry. We've seen and trudged through the valley of the low-lows. Round 2 haunts me even now, despite the awesome success that was round 3 and the promise Logan has shown so far during round 4. There's no reason to believe that he won't clear his Meth soon and be able to come home again.
But I confess that fear has entrenched itself in my heart and I'm having a hard time believing that this will all have a good outcome. I want to believe. I want to have the faith that people like my grandma (hi grandma) have about all of this. But I'm just so... worried. Scared. Stressed. Afraid. All of those things that are natural for me to feel, but not at all productive or helpful. I looked Logan's pony pictures from preschool last year and instead of allowing them to make me smile, they made me cry.
I need to re-focus, uproot the fear, re-set my eyes on the prize, and be hopeful again. I just need a little kick to get it done. Easy enough, right? Not really.
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