Journal History
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Friday, October 7, 2011 7:54 AM CDT
In the immortal words of Michael Stipe, it's easier to leave than to be left behind...
It's hard to believe it has been nine years, but not so hard to believe that we miss Charlie as much as we ever did. Time doesn't diminish the loss, or the love, thank God!
Thursday, October 7, 2010 1:57 PM CDT
I had to share this photo of our sweet friend, Karen, who surprised us by making cupcakes with do-it-yourself rainbow icing for our church dinner on Sunday, in memory of Charlie and his rainbow obsession. Where would we be without such wonderful friends?
From "A child said, What is the grass?"
What do you think has become of the young and old men?
What do you think has become of the women and
children?
They are alive and well somewhere;
The smallest sprouts show there is really no death,
And if ever there was it led forward life, and does not wait
at the end to arrest it,
And ceased the moment life appeared.
All goes onward and outward. . . .and nothing collapses,
And to die is different from what any one supposed, and
luckier.
-- Walt Whitman
God the Creator will not always save us from these dark forces, but He will save us in them, being with us in the darkness and promising us, always promising us, that the new creation which began at Easter will one day be complete and that with that completion there will be full healing, full understanding, full justice, full reconciliation, full consolation. The thorns and the thistles will be replaced by the cypress and the myrtle.
-- N.T. Wright
Wednesday, October 7, 2009 9:53 PM CDT
Thank you for checking in with us today! I decided to mark the anniversary with the picture of Charlie enjoying the fort because we moved to a new (well, a new old) house at the end of August, and like all of our memories of Charlie and all of his special possessions, the fort came with us to our new home near Hamline University, where Jack is enjoying it with his new neighborhood friends. I'll post a better update soon, perhaps with some pictures of our new digs.
In the meantime, I wanted to share something that landed in my e-mail inbox today, as part of a discussion that had nothing at all to do with Charlie's anniversary but that carries a message that seems so fitting for the day. I will let it speak for itself -- you'll need to copy and paste it into your browser:
http://www.youtube.com/watch?v=th6Njr-qkq0
We are just so thankful for every moment we shared with Charlie and for all the love you have shown us over the years!
Monday, March 30, 2009 11:01 AM CDT
An update, in March?! The annual October updating-of-the-webpage is a long way off, but I decided to revive Charlie's dormant page to post an article I wrote for our church newsletter. I'm senior warden this year, a job that sounds like it should come with a big bunch of keys and a billy club, but what it really means is that I have an opportunity every month to write about what's on my mind, spiritually. As I was writing my latest article, I realized that, although I have told this remarkable story to many people, I have never shared it on Charlie's page, until now! So here's my article, and inside it is the story:
At our Lenten retreat, Rev. Mary Ellen Ashcroft passed around a bowl of stones from the North Shore and invited us each to take one. My rock was a homely pinkish blob, the shape and color of a human heart. Turning it over, I saw a jagged cleft on the other side; this was a deeply broken heart. Mary Ellen asked us to think of our stones as a space cleared in our hearts and minds, and invited us to name them as a way of holding on to this new space. The gouge in my heart-shaped rock reminded me of a Hasidic tale told by Parker Palmer in "The Politics of the Broken-Hearted," from the essay collection Deepening the American Dream: "A disciple asks the rebbe, 'Why does the Torah tell us to "place these words upon your hearts"? Why does it not tell us to place these holy words in our hearts?' The rebbe answers, 'It is because as we are, our hearts are closed, and we cannot place the holy words in our hearts. So we place them on top of our hearts. And there they stay until, one day, the heart breaks and the words fall in" (133).
At our first meeting of the new vestry on February 28th, we continued our practice of dwelling in Scripture, reflecting together on Philippians 2:1-11 and allowing God's Word to enter more deeply into our hearts. I have always read this passage as a primer on how to get along with others in Christian community, but what stood out to me this time was Paul's encouragement to be of the same mind as Christ Jesus, who "emptied himself" in obedience to God. That's a tall order, a greater challenge than merely conceding a point in a debate about the budget or what color to paint the sanctuary. Even if we're willing to yield to someone else's opinion, it's easy to remain full of ourselves, self-reliant and impervious to the real influence of others.
Sometimes the words sink in slowly, even through the deepest wounds. After our son died of cancer six years ago, a coordinator in the hospital's bereavement program offered to match me with a parent who had gone through the loss of a child and had re-emerged, more or less intact. It was a noble idea, one that I could support in theory. I had, in fact, been volunteering for years at Children's with the same coordinator, supporting parents whose babies were struggling in the neonatal intensive care unit. But it was one thing to breeze into the NICU again as the veteran with all the answers, ready to soothe the newest frantic parent, and it was quite another to be on the receiving end of such care.
I made conditions. I would agree to a match if she could find me a mother whose child had died under similar circumstances, who had battled a dread disease with every expectation of a cure -- a good prognosis gone suddenly wrong. And it had to be someone with a sense of humor. Undaunted, my coordinator rose to the challenge. A letter arrived, informing me that a suitable match had been found and that we would be partnered by telephone for one year. My match, Ingrid, would make the first contact that week, at a time I had indicated would be convenient. It was a tidy, clinical arrangement.
I dreaded getting that first phone call. There was no room in my life or my heart for new people, no energy for new friendships. I could barely return calls from the friends I already had. How could a manufactured relationship help me cope with a loss that could never be restored -- not in this world, and maybe not ever? The only way I could cope with the doubt that was beginning to cripple my faith was to keep it tamped down, and my only hope of keeping my ragged emotions together was to reveal them to a select few.
When the phone rang and I saw Ingrid's name on caller ID, my avoidance impulse reared up; I would let it go to voice mail and call back when I felt more sociable. But on the last ring, a different impulse swept over me. I grabbed the phone and stammered through the initial pleasantries. Then Ingrid asked me to tell her Charlie's story, and she listened while I took her through every twist and turn of his complicated plot. She clearly met my humor requirement, despite having lived through moments when she couldn't imagine laughing again. I asked Ingrid to tell me about her child. His name was Malcolm, she said, and as she began to tell me about him, the wheels started churning in my brain, until a recognition clicked into place and an electric jolt shot through my spine. "Ingrid!" I interrupted, "I just realized something -- Charlie is buried right next to Malcolm!" Of all the cemetery plots in the Twin Cities, we had somehow chosen the one next to her son.
I told Ingrid about how Paul and I had toured the cemetery two days after Charlie's death, numbly going about the absurd task of finding a "good" place to bury our child. We had nearly exhausted Roselawn's 160 acres when we came to a towering maple tree, ablaze with orange, which drew us to a section of family plots, and a headstone engraved with a cartoon from Saint-Exupery's The Little Prince. The dates told us the boy was seven when he died, the same age as the big brother Charlie had left behind. Despite all that was wrong with our situation, something about this spot had felt right. Stunned, Ingrid recalled visiting Malcolm's grave and seeing the fresh, plot next to his. She could see from the small rectangle of cut-out sod that it was a child's grave, and her heart broke all over again for a family she didn't even know. As we put the pieces together, we saw that we already shared a deep connection, and we laughed when we realized that one day the two of us would be buried next to each other. The hospital had matched us for the duration of one year, but we had already been matched for eternity.
When I shared this story with family and friends, many declared it a miraculous sign that God was in control, even in the midst of tragedy. To me, it was enough that God was simply there, in this unlikely connection between two broken-hearted strangers. What struck me then was that there could be no miracle without Ingrid's willingness to reach out to a stranger and talk about the hardest experience of her life. What strikes me now as I reflect on Paul's words to the Philippians is that the miracle relied, too, on my rare willingness to be "emptied out" so that unfathomable grace could enter in.
There are two ways that a heart can break, Parker Palmer writes in "The Politics of the Broken-Hearted." It can shatter into a thousand shards, a wound that will never heal. Or, like a small, clenched fist, it can break wide open. My prayer for the people of St. Matthew's is that we will, like Jesus, empty ourselves so that we can enter into relationships that are deep and authentic, and know God in the connections between us.
Monday, March 30, 2009 10:42 AM CDT
An update, in March?! The annual October updating-of-the-webpage is a long way off, but I decided to revive Charlie's dormant page to post an article I wrote for our church newsletter. I'm senior warden this year, a job that sounds like it should come with a big bunch of keys and a billy club, but what it really means is that I have an opportunity every month to write about what's on my mind, spiritually. As I was writing my latest article, I realized that, although I have told this remarkable story to many people, I have never shared it on Charlie's page, until now! So here's my article, and inside it is the story:
At our Lenten retreat, Rev. Mary Ellen Ashcroft passed around a bowl of stones from the North Shore and invited us each to take one. My rock was a homely pinkish blob, the shape and color of a human heart. Turning it over, I saw a jagged cleft on the other side; this was a deeply broken heart. Mary Ellen asked us to think of our stones as a space cleared in our hearts and minds, and invited us to name them as a way of holding on to this new space. The gouge in my heart-shaped rock reminded me of a Hasidic tale told by Parker Palmer in “The Politics of the Broken-Hearted,” from the essay collection Deepening the American Dream: “A disciple asks the rebbe, ‘Why does the Torah tell us to “place these words upon your hearts”? Why does it not tell us to place these holy words in our hearts?’ The rebbe answers, ‘It is because as we are, our hearts are closed, and we cannot place the holy words in our hearts. So we place them on top of our hearts. And there they stay until, one day, the heart breaks and the words fall in” (133).
At our first meeting of the new vestry on February 28th, we continued our practice of dwelling in Scripture, reflecting together on Philippians 2:1-11 and allowing God’s Word to enter more deeply into our hearts. I have always read this passage as a primer on how to get along with others in Christian community, but what stood out to me this time was Paul’s encouragement to be of the same mind as Christ Jesus, who “emptied himself” in obedience to God. That’s a tall order, a greater challenge than merely conceding a point in a debate about the budget or what color to paint the sanctuary. Even if we’re willing to yield to someone else’s opinion, it’s easy to remain full of ourselves, self-reliant and impervious to the real influence of others.
Sometimes the words sink in slowly, even through the deepest wounds. After our son died of cancer six years ago, a coordinator in the hospital’s bereavement program offered to match me with a parent who had gone through the loss of a child and had re-emerged, more or less intact. It was a noble idea, one that I could support in theory. I had, in fact, been volunteering for years at Children’s with the same coordinator, supporting parents whose babies were struggling in the neonatal intensive care unit. But it was one thing to breeze into the NICU again as the veteran with all the answers, ready to soothe the newest frantic parent, and it was quite another to be on the receiving end of such care.
I made conditions. I would agree to a match if she could find me a mother whose child had died under similar circumstances, who had battled a dread disease with every expectation of a cure – a good prognosis gone suddenly wrong. And it had to be someone with a sense of humor. Undaunted, my coordinator rose to the challenge. A letter arrived, informing me that a suitable match had been found and that we would be partnered by telephone for one year. My match, Ingrid, would make the first contact that week, at a time I had indicated would be convenient. It was a tidy, clinical arrangement.
I dreaded getting that first phone call. There was no room in my life or my heart for new people, no energy for new friendships. I could barely return calls from the friends I already had. How could a manufactured relationship help me cope with a loss that could never be restored – not in this world, and maybe not ever? The only way I could cope with the doubt that was beginning to cripple my faith was to keep it tamped down, and my only hope of keeping my ragged emotions together was to reveal them to a select few.
When the phone rang and I saw Ingrid’s name on caller ID, my avoidance impulse reared up; I would let it go to voice mail and call back when I felt more sociable. But on the last ring, a different impulse swept over me. I grabbed the phone and stammered through the initial pleasantries. Then Ingrid asked me to tell her Charlie’s story, and she listened while I took her through every twist and turn of his complicated plot. She clearly met my humor requirement, despite having lived through moments when she couldn’t imagine laughing again. I asked Ingrid to tell me about her child. His name was Malcolm, she said, and as she began to tell me about him, the wheels started churning in my brain, until a recognition clicked into place and an electric jolt shot through my spine. “Ingrid!” I interrupted, “ I just realized something – Charlie is buried right next to Malcolm!” Of all the cemetery plots in the Twin Cities, we had somehow chosen the one next to her son.
I told Ingrid about how Paul and I had toured the cemetery two days after Charlie’s death, numbly going about the absurd task of finding a “good” place to bury our child. We had nearly exhausted Roselawn’s 160 acres when we came to a towering maple tree, ablaze with orange, which drew us to a section of family plots, and a headstone engraved with a cartoon from Saint-Exupéry’s The Little Prince. The dates told us the boy was seven when he died, the same age as the big brother Charlie had left behind. Despite all that was wrong with our situation, something about this spot had felt right. Stunned, Ingrid recalled visiting Malcolm’s grave and seeing the fresh, plot next to his. She could see from the small rectangle of cut-out sod that it was a child’s grave, and her heart broke all over again for a family she didn’t even know. As we put the pieces together, we saw that we already shared a deep connection, and we laughed when we realized that one day the two of us would be buried next to each other. The hospital had matched us for the duration of one year, but we had already been matched for eternity.
When I shared this story with family and friends, many declared it a miraculous sign that God was in control, even in the midst of tragedy. To me, it was enough that God was simply there, in this unlikely connection between two broken-hearted strangers. What struck me then was that there could be no miracle without Ingrid’s willingness to reach out to a stranger and talk about the hardest experience of her life. What strikes me now as I reflect on Paul’s words to the Philippians is that the miracle relied, too, on my rare willingness to be “emptied out” so that unfathomable grace could enter in.
There are two ways that a heart can break, Parker Palmer writes in “The Politics of the Broken-Hearted.” It can shatter into a thousand shards, a wound that will never heal. Or, like a small, clenched fist, it can break wide open. My prayer for the people of St. Matthew’s is that we will, like Jesus, empty ourselves so that we can enter into relationships that are deep and authentic, and know God in the connections between us.
Tuesday, October 7, 2008 11:54PM CDT
As I pulled on my rainbow socks this morning, I realized that I hadn't worn them in a long time. I have been settling for dull socks -- I'll have to try to do better from now on! Fortunately, Jack enthusiastically carries on Charlie's tradition of fun socks, though it gets harder to find interesting boy socks that fit Jack's growing six-year-old feet.
After a dreary day of much-needed rain, we were treated to an exquisite rainbow this evening (thanks for the heads-up, Auntie Header!) Paul snapped some pictures and we had hoped to put them up on Charlie's page, but the photos didn't do it justice, so you'll have to just imagine it. It was a fitting end to this day of remembrance.
I have been thinking a lot about Charlie's 10th birthday, coming up on Friday, and how this past decade has shaped our family. I'll post a family update and some photos then, for anyone who would like to take a peek. Thanks for remembering Charlie and stopping by for our annual update!
Sunday, October 7, 2007 10:12 PM CDT
Thank you for remembering Charlie today. We can scarcely believe it has been five years, and yet it feels like such a long, long time since we have seen Charlie face to face and heard his wonderful non-stop chatter. Liam decided to write about Charlie's death for his writing class, and we were talking today about how it feels to look back on that day, five years later. "I don't feel any less sad than I did then," said Liam, and I think he speaks for all of us -- we have learned to carry the sadness, with the help of all our loved ones.
Sunday, July 8, 2007 7:25 PM CDT
We're BAAAAAAAAAACK.
Once again, thanks for hanging in with us as we begin the final lap of our Relay for Life fund-raising. Invitations to the ice cream social have just gone out, and we hope you can join us. The link to our Relay site is below -- it's easy to donate online, if you'd like to help us reach our goal.
With your help, we have raised more than $15,000 for the American Cancer Society and we hope to reach $20,000 this year before we take our efforts and (our orange T-shirts) in a new direction.
Since the last journal entry in October (!), school has finished for Liam and he had a great fifth-grade year. The highlight was being given a "Cougar Award," for students who display exceptional character and embody the best that Capitol Hill strives for. He also completed several lengthy projects, the largest of which was a state project that weighed in at more than 15 pages. Jack is now in the last weeks of his first year at school as a "half day friend" and will start all-day kindergarten after Labor Day. Terese is very much looking forward to that, and has promised to try her long neglected writing hand with some free-lance work. I will be trying to ignore turning 40 this week and also ignore the long honey-do list Terese has for me.
The ice cream social this year will feature an assortment of colorful art projects - prayer flags, sand art and beads. (Yes, we are trying to use up our left-overs!) It will also be the first year with my new pressurized tap so no more pumping the keg and flat root beer by the end of the day. Hope you can join us for the ice cream social and/or the Relay for Life!
Saturday, October 7, 2006 8:58 PM CDT
You know it has been too long between updates when you can't even remember how to log in! Thank you to everyone who has remembered Charlie today and throughout our months of silence. Although we have neglected the web page for a long while, we carry all of your words of support and love with us, all the time! Just as Charlie is ever-present in our thoughts and prayers, so are all of you.
We spent the afternoon at the Minnesota Landscape Arboretum, surrounded by the orange-y autumn splendor that Charlie would have loved. In the gift shop, Paul spotted the perfect token to commemorate the day -- an orange and rainbow-colored chameleon sculpture for Charlie's garden. I think we'll take it to the cemetery on his birthday Tuesday -- we'll post some pictures, if we can remember to take the camera along.
All week, I have felt as if we were about to step over a difficult threshhold; on this fourth anniversary of his death, Charlie has now been gone from us longer than he was with us. It's hard to comprehend that -- I think I have been afraid that his importance will somehow diminish now. But I know that it can't, and won't. Charlie's life shaped our lives and our family's life together in ways that run deep, and that have nothing to do with time as we measure it here.
Thursday, July 13, 2006 9:01 AM CDT
Thanks for sticking with us over the long winter and spring! Now that summer's first big heat wave is sweeping over Minnesota, we are also heating up for the Relay for Life event in White Bear Lake at the end of the month. The new link for our Team Charlie site is listed below. The annual Ice Cream Social is planned for Sunday, July 23rd from 2 - 6pm. We feature tap root beer, Schell's 1919 brand to be precise, so please come and beat the heat with us!
-Paul
p.s. Happy 1st 39th Birthday to me!
Monday, October 10, 2005 9:48 PM CDT
Thank you so much for remembering Charlie and supporting our family this week! In honor of his birthday today, the amazing teachers and therapists who cared for Charlie planted a beautiful crabapple tree for him in on the new playground at his school. We were so touched by the time and effort they put into the celebration -- they had a fantastic rainbow cake, complete with buffalo. We were reminded once again of how lucky Charlie was to have so many people caring for him throughout his life -- it was a wonderful gathering of teachers, therapists, family and friends, and we couldn't have asked for a lovelier day to honor Charlie's sunny spirit.
I was surprised to discover that I had never updated Charlie's web page after the Relay for Life. I was sure I had posted an update and put up team photos, but that must have been in some kind of alternate universe. Our team topped $6,500, which was far more than we had set out to raise. No rest for the weary, though -- next year, we'll set our sights on $10,000. The team has grown to the point where we'll need to register two teams so that we can get a second campsite -- and there's always room for more!
Life is far busier than I'd like it to be right now, but we did manage to get away to get away to the North Shore last weekend to go camping. It was my first-ever trip to Duluth -- surely the fulfillment of a lifelong dream. We had a great time hiking, sightseeing, star-gazing, and trying our hand at campfire cooking. I’ll post some new photos in the album, and try to update once in awhile. Now that Jack is in preschool two afternoons a week, I’ve been scooting over to the library with my laptop, using my two hours of freedom to finally start writing that book. At this pace, I’ll finish when I’m about 97, but at least it’s a start. Thanks for faithfully checking in!
Friday, July 29, 2005 6:53 AM CDT
What?! Me, updating the web page (or doing anything remotely functional) before 7 a.m.? Only because it's Relay Day! Here at Team Charlie headquarters, orange shirts and miscellaneous rainbow-hued items are strewn across every available surface. We hit the track at 7 p.m. tonight, but it's not too late to contribute! You can pledge online by following the link below. We have raised so much money that we had to increase our fundraising goal from $3,000 to $5,000, and we might need to raise it again -- as of this morning, our total stands at $5,261! We are overwhelmed, once again, by the generosity and support that just keeps flowing in. Thank you!
If you would like to walk with us at the Relay tonight, please join us! For more information, you can follow the first link below, and then click on the home page link (at left) for more information about the White Bear Lake Relay for Life. As you approach the track, our campsite will be at the far end of the field, to your right, on the inside perimeter of the track. Just look for a sea of orange, and you'll find us!
Sunday, July 17, 2005 6:52 PM CDT
It's so exciting to go to the mailbox these days! Each day brings more responses to our Relay for Life mailing, and we are about halfway to our fundraising goal of $3000. More importantly, we have a fighting chance to win that 25-pound salted nut roll that goes to the top online fundraising team. I'm confident that, when the latest donations have all been tallied, we'll be comfortably ensconced in the Top Five. I can almost taste that salty, nutty goodness. During Charlie's four-and-a-half-month NICU stay, I practically lived on salted nut rolls from the vending machine and I wasn't sure I'd ever want to touch another one, but Charlie's cancer treatment brought many opportunities to re-acquaint myself with the hospital vending machines.
But enough about my snacking propensities. We're stockpiling ice cream, containers of all shapes and sizes, and loads of sand in colors that would shock Mother Nature, all in preparation for the Sand Art Party and Ice Cream Social. It's coming up soon, on Saturday, July 23rd, from 2 p.m. to 6 p.m., in our backyard, 116 Rose Ave. W., in St. Paul. Everyone is welcome! If you need directions, please drop us a note in the guestbook, and we'll get them to you.
If you can walk with us in the Relay on Friday, July 29th (or run, as some of our more ambitious friends like to do), please let us know, in the guestbook or by e-mailing us at terese@visi.com. For me, there's no better feeling than being surrounded by a bunch of people who are willing to outfit themselves in outlandishly orange T-shirts and do laps in defiance of this monster called cancer. We are so blessed to have you on our team! To give donations with no fuss, you can follow the first link at the bottom of this page to our team's page on the American Cancer Society' secure website.
My sister, Robyn, has recovered well from her thyroid cancer surgery, and is now headed into what might be the most difficult part of her treatment, discontinuing all thyroid hormone in preparation for radioactive iodine treatment in August. Please keep her in your thoughts and prayers as she faces the extreme fatigue and other side effects that the next few weeks may bring.
Thank you for your faithful support!
Edit: corrected email address, sorry!
Saturday, July 16, 2005 10:10 PM CDT
It's so exciting to go to the mailbox these days! Each day brings more responses to our Relay for Life mailing, and we are about halfway to our fundraising goal of $3000. More importantly, we have a fighting chance to win that 25-pound salted nut roll that goes to the top online fundraising team. I'm confident that, when the latest donations have all been tallied, we'll be comfortably ensconced in the Top Five. I can almost taste that salty, nutty goodness. During Charlie's four-and-a-half-month NICU stay, I practically lived on salted nut rolls from the vending machine and I wasn't sure I'd ever want to touch another one, but Charlie's cancer treatment brought many opportunities to re-acquaint myself with the hospital vending machines.
But enough about my snacking propensities. We're stockpiling ice cream, containers of all shapes and sizes, and loads of sand in colors that would shock Mother Nature, all in preparation for the Sand Art Party and Ice Cream Social. It's coming up soon, on Saturday, July 23rd, from 2 p.m. to 6 p.m., in our backyard, 116 Rose Ave. W., in St. Paul. Everyone is welcome! If you need directions, please drop us a note in the guestbook, and we'll get them to you.
If you can walk with us in the Relay on Friday, July 29th (or run, as some of our more ambitious friends like to do), please let us know, in the guestbook or by e-mailing us at www.visi.com. For me, there's no better feeling than being surrounded by a bunch of people who are willing to outfit themselves in outlandishly orange T-shirts and do laps in defiance of this monster called cancer. We are so blessed to have you on our team! To give donations with no fuss, you can follow the first link at the bottom of this page to our team's page on the American Cancer Society' secure website.
My sister, Robyn, has recovered well from her thyroid cancer surgery, and is now headed into what might be the most difficult part of her treatment, discontinuing all thyroid hormone in preparation for radioactive iodine treatment in August. Please keep her in your thoughts and prayers as she faces the extreme fatigue and other side effects that the next few weeks may bring.
Thank you for your faithful support!
Thursday, June 23, 2005 3:22 PM CDT
Gee, I guess that wasn't so hard...
I've been vowing for weeks to resurrect Charlie's web page as we gear up again for the American Cancer Society Relay for Life. I wish my powers of resurrection extended a little farther, but attempts to undermine the natural order never seem to end well in the movies. So it goes.
First things first: The Relay for Life in White Bear Lake is coming up on Friday, July 29th, only five weeks away! The intrepid members of Team Charlie have been dusting off our orange T-shirts and engaging in a grueling training regimen. Won't you join us? There are so many ways to help, and one of the most important ways is through financial contributions. Our team raised more than $3,000 last year, and we hope to raise at least that much this year. There are several easy ways to give. To sponsor a team member online, you can visit Team Charlie's web page (click on the link at the bottom of the page -- it's a very long URL). When you get to the team page, just click on an individual member of the team (it doesn't matter which member you choose, as the money is all going to the same place -- but choose me, anyway).
You can also mail contributions to us in the form of a check made payable to The American Cancer Society. Our address is 116 Rose Ave. W., St. Paul, MN 55117. For more information about what the Relay for Life is, exactly, and how it has grown, please check out the American Cancer Society's web page at www.cancer.org and click on the Relay for Life icon.
Unfortunately, this spring brought us another new reason to Relay, when my sister, Robyn, was diagnosed with thyroid cancer. She had surgery last week to remove her thyroid and 20 lymph nodes, and will undergo radioactive iodine treatment in about a month. While we're thankful that Robyn's prognosis is excellent, I imagine she's getting mighty tired of hearing that she's lucky to be battling a "good" cancer. There is no such thing. We're looking forward to cheering her on during the Survivors' Lap at the Relay for Life this year. Since she's likely to be feeling very poorly at that time due to the phase of her treatment, we may even pay for her to have a stretcher ride around the track, provided by the fire department's team (the Hosers, of course!). Last year was our first year at the White Bear Relay, and they really know how to have a good time -- and raise money. The team who raised the most money online last year won a 25-pound salted nut roll, which they promptly chopped into pieces and sold to raise more money. These people are ruthless!
Our paltry contribution to the Relay will again be bolstered by our second annual ice cream social and art party, on Saturday, July 23rd, from 2 to 5 p.m., in our backyard. We'll be doing sand art this time (a little less messy than last year's tie-dye project), so come and make yourself a portable rainbow, eat your fill of ice cream, and celebrate Charlie's spirit with us! I'll post again next week (really!), with more information about our team events and a family update. I'm putting up some Team Charlie pics in the photo album, so check 'em out and join the fun. Thanks for visiting Charlie's page!
Tuesday, January 4, 2005 7:43 PM CST
HAPPY NEW YEAR!
(Sorry -- was that too loud?)
We trust that you have all doffed your lampshades and returned to lives of sober reflection. Paul and I are still recovering from the mind-altering and sleep-depriving effects of our New Year's consumption -- not of too much alcohol, but of 13 nearly-continuous hours of intensive movie-watching. We braved the entire Lord of the Rings trilogy (extended versions, of course) on Paul's big screen, with Paul's hardy sisters and brother (and WITHOUT kids -- yahoo!). The numbness has nearly retreated from our posteriors, and we'll catch up on sleep someday. It was well worth it.
The holidays are not quite over for us -- we'll wrap up Christmas with the crowning feast at Paul's parents' this Sunday. So far, we have had a lovely time, but I have found the holidays to be more hectic this year, as we have undertaken to be a little more festive than in the past few years. It has been good, but a little tiring, and I'm looking forward to the boring stretch of winter ahead of us.
I've put some NEW PICS in the photo album, of the Christmas pageant at church. Liam was promoted to First King this year, and Jack reprised his previous role as sheep, with a twist -- as we were getting ready for the pageant, Jack announced, "No like sheep, anymore -- I'm a walrus!" Ever the quick thinker, Paul asked Jack if he could be a walrus PRETENDING to be a sheep. "Yes!" Jack declared, and embraced the suggestion with enthusiasm -- as he frolicked around in the sheep suit and tried to steal Liam's big scene, I don't think anyone guessed that he was actually a walrus in sheep's clothing. That is some complicated acting, as our very gifted actor-friend remarked -- many layers of motivation. Perhaps Jack's walrus inspiration was a little wink from Charlie -- one of my favorite photos of Charlie was taken shortly before he died, showing his best impersonation of a belligerent walrus. It will be a little sad to let go of the sheep suit that Jack has worn for the past two years, and Charlie wore four years ago -- Jack is getting too big for it, and we'll have no more little sheep to fill it. *Sigh*
We hope you had happy holiday celebrations and you're all enjoying your new toys. Jack cast aside all of his new things in favor of a balloon he dug out of the junk drawer and a whoopee cushion left over from Liam's birthday party. Someone, please remind me to do all of Jack's Christmas shopping at the dollar store (or in the junk drawer) next year!
Sunday, December 5, 2004 11:23 PM CST
Is anyone still out there? I'll be very surprised if you are! As Jack has been saying lately on our endless stream of shopping errands , "Where are we?!" or, more aptly, "Where have we been?!"
For one thing, we have been busy making all kinds of domestic rearrangements. Paul has been toiling in the basement for months and his long-anticipated home theater set-up is now complete. We'll be hibernating in the darkened basement for the next few months, illuminated only by the glow emanating from Paul's manly 96-inch screen. Expect us to emerge sometime in the spring -- pallid, flabby, and a little disoriented. At least we're getting a small bit of exercise, rearranging furniture -- the basement remodeling project was just the first domino to fall, prompting changes all through the house. Our office has moved downstairs, too, and now features my very own desk and my very own notebook computer. All of the moving and technological fine-tuning led to various states of computerlessness over the past couple of months. Add to that the new decorating and organizing projects, school events, work, Jack, potty training and concomitant loads of laundry, holiday stuff, and -- certainly not least -- the allure of that big screen and a cupboard full of movies waiting to be watched, and you'll have a pretty good idea of where we've been.
The changes have been very satisfying -- I think they'll make our little house work much better and lead to a lot of happy family times. All we're missing now is a Hogwarts-style Room of Requirement, which would certainly come in handy. I'm finding myself more interested in whole-heartedly decorating for Christmas this year and celebrating the season with a little more enthusiasm than I've been able to muster for the past two years. It seems impossible that this is the third Christmas we will mark without Charlie here to celebrate with us. Jack is responsible for a massive infusion of Christmas spirit around here -- he is tremendously excited about it, and insists on listening to the non-stop Christmas music on Kool 108 every time we get into the car: "Turn on Christmas, Mommy!" So we're doing our best to turn on Christmas for Jack, and for Liam, and for ourselves, as much as we can stand.
Thank you for continuing to check in on us, through the long silence. I'm back online, and if I can pull myself away from that big screen once in awhile to spend some time at this little one, I'll do a better job of keeping up my end of the bargain. In the meantime, have fun turning on Christmas!
Sunday, October 10, 2004 9:35 PM CDT
In keeping with our family tradition, this one's for Charlie, who concluded his prayers EVERY night with the same words: "And thank you for making the Cat in the Hat Books!" (It's easy to mix up God and Dr. Seuss):
"If we didn't have birthdays, you wouldn't be you.
If you'd never been born, well then what would you do?
If you'd never been born, well then what would you be?
You might be a fish! Or a toad in a tree!
You might be a doorknob! Or three baked potatoes!
You might be a bag full of hard green tomatoes.
Or worse than that...Why, you might be a WASN'T!
A Wasn't has no fun at all. No, he doesn't.
A Wasn't just isn't. He just isn't present.
But you...You ARE YOU! And, now isn't that pleasant!"
Now, Charlie, find Dr. Seuss, climb up into his lap, and have him read the whole thing to you. You can invite Mr. Rogers to join in the party, and too many children are there to celebrate with you. We wish we could be there, too. Happy birthday, Pumpkin!
Thursday, October 7, 2004 11:47 PM CDT
Thank you so much for checking in on Charlie's anniversary. I have been so touched this week by all the people who have taken a moment to let us know you're thinking of us and remembering Charlie, especially on this day. Paul and I have been at kind of a loss to figure out how to mark this second anniversary -- it has been a day too much like any other, too full of work, school, errands, homework, laundry, dirty dishes, endless trips to the potty (Jack is doing great with that, by the way), and all the other mundane details that occupy our days and preoccupy our minds. In juggling all of the things that "had" to be done, we didn't even make it to the cemetery, as we had planned. We felt pretty half-hearted about the whole thing.
Then, as I was helping Liam finish up his homework tonight, his face suddenly brightened up, and he said, "I forgot to tell you -- Daniel and I released Squirmy today!" Liam and his classmates have been raising monarch caterpillars and watching their transformation into butterflies -- he and his partner were immensely proud that theirs was the first caterpillar in the class to form its chrysalis, and the first to emerge in its new body. Squirmy's timing was excellent -- I'm glad that Liam was able to watch him (or her) take flight today, of all days, and it lifted my heart a little to hear him tell about it.
We have learned, over the past two years, to somehow live with a wound that will never heal and a void that will never be filled, in this lifetime. We are so grateful for the love of our friends and families -- it's the only balm that soothes the ache, and makes that empty place a little less lonely.
I promise a fuller update soon -- we look forward to celebrating Charlie's birthday this Sunday, and Liam's on next Sunday. Jack is feeling really gypped and doesn't understand why he has to wait so long for his own birthday, but January will probably be here before we know it.
Monday, September 13, 2004 9:46 PM CDT
Yesterday morning, Paul opened up the front door to get the newspaper, came back in and asked, with a puzzled look on his face, "Uh...have you seen my car?" Suddenly, our street had an extra parking space on it, as we discovered that Paul's car had been stolen in the middle of the night. I know that Paul isn't as amused as I am, but I just find it a bit hysterical that someone found our eight-year-old Saturn station wagon too irresistible to pass up. Apparently, the case of oil Paul had stashed in the back to facilitate frequent refills wasn't a deterrent to the thieves, who have probably discovered by now that the car has been going through oil at an impressive clip. Perhaps we should feel flattered that the thief felt it was worth the trouble to pick the locks and hot-wire our humble little car. Luckily, we don't tend to form deep emotional attachments to our cars (although the thugs had better not lay a finger on my irreplaceable Expo), and our families have -- as always -- stepped in to help, and will cover us with loaner vehicles until the insurance issues are ironed out.
So, it's just another headache and probable financial setback to contend with, but I have to admit that I have very little capacity to be surprised or daunted anymore by the curves life can throw at us. There's good and bad in that -- resilience is a helpful and wonderful thing, but there comes a point when it's hard to distinguish resilience from near-total lack of interest in the matters of this world. I think Paul and I have both felt a certain sense of resignation since Charlie's death, a letting go of any illusion that we could set a master plan for our lives. Or, more to the point, that the only plan we can hope to follow is to stick together and love our children fiercely, even when they drive us nuts.
That love will surely be put to the test this week, when Jack and I embark on potty training in earnest, after dabbling in it for several months. Sizing up our dwindling supply of diapers and anticipating that our lives are only going to get much busier as the school year gets into full swing, I made a rash decision tonight to take the plunge tomorrow, and we'll see whether Jack concurs. We have a tall stack of undies, a functional washing machine, and a two-year-old whose new mantra is "I do it MYSELF, Mom!" Wish me luck, and lots of patience!
Tuesday, August 31, 2004 11:55 PM CDT
Having shattered my personal record for Most Consecutive Days Without an Update, I figured I could at least get in one August entry, just under the wire. I'm sorry for the long silence -- I really had no intention of going on hiatus for a month, but here we are, suddenly, at the end of summer.
At long last, there's a photo of Team Charlie 2004 in the photo album. But don't just settle for one -- you can see more photos of our team on the White Bear Lake newspaper's web page, www.whitebearpress.com. Just click on the "DotPhoto" box or link on the newspaper's website to see Team Charlie prominently featured in their coverage of the event, in the "Relay for Life" album -- we must have been exceptionally photogenic that night, in our bright orange shirts. The White Bear Relay for Life was a great success -- our team raised more than $3,000 for the American Cancer Society, and the event total was $327,000, with more than a hundred teams participating. We owe many thanks to all who walked (and ran) with us, contributed their money and time, and encouraged and supported us in countless other ways. Liam told me last week that he has decided to give all the money in his piggy bank to the Relay for Life, and I know that his generosity was inspired by all the the contributions he saw from our friends and families.
After the Relay, the rest of the summer just seemed to evaporate before my eyes. Paul has been busy demolishing and rebuilding what used to be our finished basement, or as Jack affectionately calls it now, "Daddy's big mess." Jack has been hamming it up, calling insistently for the camera to record his every attempt at cuteness, and gleefully telling "knock knock" jokes that go absolutely nowhere. Liam has decided to launch an end-of-summer art sale to fund his Lego acquisitions program, and he has lined up some patrons who are willing to part with $1 to own a Liam Kiehne original. It's refreshing to see him drawing something other than Superboys comics, for a little while, although he's making plans to sell those, too.
The Kiehne clan gathered here over the weekend for our annual State Fair extravaganza, a holiday almost bigger than Christmas in the family tradition (the photo above is from Charlie's first State Fair experience, and a favorite of mine.) We did all the usual things, and a few new ones, too. For the first -- and possibly last -- time, I ran the Milk Run on Sunday, my first attempt at a 5K race after taking up a running program this summer. The first 5 minutes were fun, but for the next 33 minutes and 55 seconds, I fought the most irresistible urge to lie down and pass out. I have finally stopped gasping for air and coughing up unmentionable stuff, but I'm not sure I'd want to make a habit of it, and can't really fathom that people I know and respect actually do this sort of thing for fun.
Speaking of voluntarily subjecting myself to painful experiences, I have kind of a tough but worthwhile thing to do tomorrow afternoon. As part of the Childrens' education program, I'm speaking to a group of hospital staff about Charlie's death, to help staff understand what parents need from them as their child is dying. I really want to be able to talk about those last hours as calmly and clearly as I can, to give the staff specific insights about how to help families at this most terrible of times -- please say a little prayer for me, that I can keep it together and say something articulate on behalf of all the grieving families.
Thank you so much for sticking with us and intrepidly checking the page for non-existent updates. Words sometimes fail us, but our friends never do! I promise I'll be back sooner next time -- the start of the school year will at least bring back some much-needed self-discipline to this household, I hope. In the meantime, please remember to check out the new photos!
Tuesday, July 27, 2004 7:56 PM CDT
Just a quick update with some web links:
Here is our team page for the White Bear Lake Relay for Life event this Friday, just copy and paste into your address bar: http://www.acsevents.org/faf/search/searchTeamPart.asp?ievent=41784&team=483200
If you are on the team, please click the "Join our Team" button. The web page has all the links you would ever want about ACS and Relay for Life.
But before you go, make sure to check out the new pictures from the Tie Dye party!
Monday, July 26, 2004 9:12 AM CDT
Someone please remind me next summer NOT to register Liam for theater camp the same week as the Relay for Life again! I've done it for the second year in a row, and I'm discovering again that what seems like a good idea in April is not necessarily so great when we get to the end of July. We're flying out the door to St. Cloud for a week, where Liam will be exploring his dramatic talents in a Children's Theater production of The Hobbit, and we'll be hustling back after Friday afternoon's performance to do the Relay Friday night.
I'm leaving many loose ends to tie up this week. I'll be taking Paul up on one of his many offers to help -- he'll soon post a link to our fundraising page, for anyone who wants to donate online. I'm also hoping he'll put up some pictures from the tie-dye party and ice cream social on Saturday afternoon, which was lots of fun and a great success -- more on that later!
Jack is whining for milk, the bags are only half-packed, and we've got to be in St. Cloud in two hours, so that's all for the moment. Thanks for checking in!
Monday, July 26, 2004 9:12 AM CDT
Someone please remind me next summer NOT to register Liam for theater camp the same week as the Relay for Life again! I've done it for the second year in a row, and I'm discovering again that what seems like a good idea in April is not necessarily so great when we get to the end of July. We're flying out the door to St. Cloud for a week, where Liam will be exploring his dramatic talents in a Children's Theater production of The Hobbit, and we'll be hustling back after Friday afternoon's performance to do the Relay Friday night.
I'm leaving many loose ends to tie up this week. I'll be taking Paul up on one of his many offers to help -- he'll soon post a link to our fundraising page, for anyone who wants to donate online. I'm also hoping he'll put up some pictures from the tie-dye party and ice cream social on Saturday afternoon, which was lots of fun and a great success -- more on that later!
Jack is whining for milk, the bags are only half-packed, and we've got to be in St. Cloud in two hours, so that's all for the moment. Thanks for checking in!
Monday, July 12, 2004 9:38 PM CDT
It's that time again. I'm snapping out of my summer reverie with a sudden jolt of realization -- the Relay for Life is less than three weeks away! It’s time for Team Charlie to hit the track.
This year, we'll be walking/running/staggering at the White Bear Lake relay event beginning Friday, July 30th, 2004, from 7 p.m. to 5 a.m., at the White Bear Lake High School South Campus. Anyone who looks good in a bright orange T-shirt -- or who doesn't mind that they look awful in a bright orange T-shirt -- is welcome to come do some laps with us. For more details about joining us, please e-mail me at terese@visi.com, leave a note in the guestbook, or call us at 651-487-6404. For inspiration, I’ve put up some PICTURES of last year’s relay in the photo album.
Those who prefer to exercise by opening up their checkbooks are welcome to engage in that alternative activity! We will proudly convey your donations, payable to the American Cancer Society, to the event. They can be mailed to our home at 116 Rose Ave. W., St. Paul, MN 55117. A wonderful way to contribute is to purchase luminarias for loved ones affected by cancer. The luminarias honor survivors and remember those we have lost by lighting up our path all night long. It’s a very moving experience, at 3 a.m., to see those names and remember why we’re putting one foot in front of the other.
We’ll be kicking off the relay festivities with a TIE DYE PARTY & ICE CREAM SOCIAL fundraiser on Saturday, July 24th, from 2 p.m. to 5 p.m., in our backyard. Please come, and bring some boring, white socks (or some other 100% cotton item) to transform. We’ll provide the colors, the ice cream, and the reggae -- for other mind-altering substances, you’re on your own. For more details, please e-mail or call me. Invitations are finally trickling out this week, but I'm missing a few mailing addresses, and we don't want to miss anyone.
In other news, I’m happy to report that Jack’s oncology check-up today showed that his AFP (potential tumor marker) has fallen to its lowest level ever and hasn’t spiked beyond normal limits since March. His ultrasound was fine, except for his perpetually slightly-enlarged spleen, which doesn’t seem to mean much. We’ll continue with the monthly blood tests and quarterly ultrasounds on the advice of Charlie’s oncologist – we’re glad to leave the worrying to him, and the peace of mind is priceless.
Watch this space for details about the relay and Team Charlie over the next few weeks. In the meantime, check out our fabulous orange selves in the photo album!
Sunday, June 20, 2004 10:43 PM CDT
In case you haven't guessed already, my journal entries are likely to be sporadic and unpredictable this summer. The boys and I have spent the past couple of weeks settling into the summer, establishing new routines and wishing that Daddy could have the summer off, too. For a child who had been living for summer vacation for the past couple of months and anxiously counting down the days 'til school let out, Liam had a surprisingly rough last day, with lots of tears over the end of second grade and the bittersweet milestone of leaving his wonderful teacher behind. My greatest wish for Liam this past fall was that, after the terrible turmoil of his first-grade year, he could have a year of stability and support in second grade. I got my wish, thanks, in large part, to his incredible teacher. Liam did a phenomenal amount of work this year and made some great leaps forward. At times, we have wondered whether the heavy workload at his gifted & talented magnet school is really worth it, but I was relieved (and surprised) to hear Liam say this week that he misses school and is looking forward to going back in the fall. I just hope he remembers those words, come September...
So we've been keeping busy (but not too busy) with Liam's daily tennis lessons and a good deal of desultory putzing around for the rest of the day. What could be better? In between bouts of doing nothing much, we've been tackling a few home improvement projects, at our place and at the homes of our Kiehne kin. We have also been tending to Charlie's Rainbow Garden (the sequel) at the cemetery (see NEW PICS in the photo album) and are hopeful that the abundance of rain has gotten everything off to a good start.
I will try not to let so much time slip by before my next update. To be honest, it's becoming harder and harder to write these entries. Yesterday, we marked the second anniversary of Charlie's diagnosis, and the journey that we have been on since then has been so exhausting. Our traveling companions are the only ones who keep us going sometimes. If you have a moment, please let us know you're out there. I've thought a lot lately about letting the web page fade away. I just can't do it, at least not yet. In church this morning, I found myself having vivid flashbacks to Charlie's funeral -- in a moment, just standing in line at the grocery store or waiting at a stoplight, it all comes flooding back. Time may heal some wounds, but never this one. Having this place to share our memories of Charlie is so precious, so I'll end, for tonight, with the thought that Liam shared with me last night as I was tucking him into bed. He was talking again about how Charlie used to crawl into bed with him in the middle of the night (something we never knew about until Liam mentioned it a couple of months ago), and he said, "I wonder if Charlie crawls into God's bed sometimes and annoys Him!" We had a good giggle about that, trying to picture what God's bed looks like (a cloud) and what His covers are made of (more clouds). Every night when I tucked him in, Charlie would call out "Don't forget to turn off the light!" as I turned to go down the stairs. We won't forget, Charlie. Sleep tight, and don't let God hog all the clouds.
Wednesday, May 26, 2004 9:15 AM CDT
Thank you for all the prayers for my mom! Her surgery went very well. Her surgeon feels confident that he removed all of the cancerous cells, with clean margins, and there was no spread to the lymph nodes, so that was great news. After a few weeks of healing, she'll start a six-week course of daily radiation treatments. That might cut into Grandma and Grandpa's lake time a little bit, but they're determined that it won't wreck their summer -- at least she'll get weekends off! She'll be on a five-year regimen of medication to prevent recurrence, but we are hopeful that the worst of it will be behind her by August.
Last week, we went on safari to Como Zoo to see Charlie's new brick on the donor plaza, a gift from some of my friends (thank you, Becky, Dawn, Jody, Kendra, Louise, and Natasha!). You can check it out in our NEW PHOTOS in the album. The next time you're at Como Zoo, you can see Charlie's brick for yourself -- it's in the area off the big tortoise's left foot (flipper?). Don't forget to visit the buffaloes -- they're as tough as Charlie, and were quite an inspiration to him.
Paul's collarbone seems to be healing well and he is happily driving again. Actually, that makes all of us happy -- the twice-daily round trips to Aveda weren't so compatible with Liam's heavy homework load and his propensity towards car-sickness. He is eagerly counting down the days until summer vacation -- eight school days to go until he is liberated! I hope we can savor each day of the summer. Thank you for checking in!
Tuesday, May 11, 2004 11:55 PM CDT
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It's Friday, May 14th, and I'm just adding a quick note to ask for prayers for my mom, who was diagnosed with breast cancer yesterday and is undergoing surgery this afternoon to remove the cancerous cells. It was caught very early and we hope to get confirmation soon that there has been no spread to the lymph nodes. We're glad they're acting quickly and it looks as if Mom's prognosis will be excellent, but I certainly don't like the idea of even a "little bit" of cancer. Please send your prayers for a speedy and complete recovery!
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Well, if it isn't one thing...
Jack sailed through his surgery so smoothly that I decided to take the boys to my parents' place for the weekend, so that Paul could paint the garage without "helpers." We had left Paul alone for approximately 5 minutes when he was hit by a car while riding his bike to the repair shop to pick up our car, ironically enough. A driver pulled out from a stop sign, turning left from a side street on to the road where he was riding, straight into Paul's path. Paul had to slam on his brakes and he catapulted over the handlebars, landing with his head against her front tire. Technically, it was a near-miss, but that doesn't mean much to Paul's battered body. His right collarbone is broken, his back, elbow, and hands are very sore, and he has some nasty road rash, but he is otherwise okay and lucky to be alive -- his helmet was cracked in two places, but it did its job and his head is completely intact, despite any evidence to the contrary.
Providentially, the accident happened right next to a Berean Baptist church, and Pastor Bob Battle immediately came to Paul's aid, praying over him while directing traffic around him at the same time. Now, there's faith in action! An off-duty firefighter also happened to be passing by and stopped to help. The ambulance arrived within three minutes and Paul was able to call his sister, Alicia, who was very resourceful in getting word to me even though I never have my cell phone actually turned on. I was glad that Alicia and Heather were able to get to the ER quickly to be with Paul. For once, my mom and I were grateful that the Friday afternoon traffic heading north was so slow, because we hadn't gotten more than 30 miles away and we were able to turn around and get back to St. Paul that much sooner. We passed a fabulous garage sale on the way back, but I decided I had better forgo the enticing bargains and head straight to the ER. That's just the first of many little sacrifices I'm making for Paul, for a change -- he is finally getting a tiny bit of payback for those three long months of bedrest when I was trying to hang on to Jack and he was running the entire household on his own, with the much-appreciated assistance of our wonderful families, who are faithfully pitching in once again.
Paul's pain that first night was excruciating, but the ER got enough pain medication on board so that we could make the ten-minute trip home from the hospital. The weekend was rough, but I'm amazed at how much better Paul is feeling (or claims to be feeling) after just a few days, and he returned to work today. I think the biggest challenges for him right now are doing things left-handed and protecting himself from his over-exuberant sons. Jack is working on his empathy skills and insisted on wearing a sling just like Daddy's for much of the weekend (SEE PHOTO in the album), and Liam has come up with all sorts of ingenious ways for Paul to avoid calamity in the future, many of which require convoluted inventions and/or superpowers. I'm hoping that Liam can invent some kind of all-purpose yardwork and gardening machine, and I could really use Charlie's help with the tomatoes this summer, as anything beyond the threshhold of our house has traditionally been Paul's territory.
When I changed Jack's diaper on Saturday morning after a sleepless Friday night, I was quite alarmed to see his incision and wondered for a split-second where that big gash had come from, forgetting for a moment that he had just had his much-anticipated surgery three days before. We have once again been reminded that life can change on a dime -- we have to cherish it, and one another!
Thursday, May 6, 2004 10:15 AM CDT
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Just a quick update to let you know that Jack's surgery went well. He woke up very calm and content, with no pain. Three hours after leaving the OR, he was tearing around the living room, chasing Liam and wrestling him to the ground. Brothers are the best medicine! I put up a post-op photo in the album. Jack is feeling great today and getting into lots of trouble -- the surgery seems to have given him superhuman strength and some very wicked ideas -- I wonder if his surgeon did a mischief implant by mistake. The Tylenol with codeine will come in handy at naptime, I think!
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Yesterday, at his pre-op physical (take two), Jack got a clean bill of health and the green light for surgery tomorrow. While we're not exactly looking forward to it, we are glad that it can finally go ahead as planned. Liam is coming along for moral support -- when we asked him if he'd like to come, he said, "Sure! I've never gotten to watch an operation before!" We hated to break it to him that he probably won't be able to observe this time, but maybe his class can do that sometime -- they do go on some pretty fabulous field trips.
Jack also had his NICU follow-up clinic appointment yesterday, with developmental testing to see how he's doing in catching up to his full-term peers. He had a great time doing the puzzles and games and is right on track for his actual age, so that was good to hear. The appointment brought up a lot of memories of Charlie's last NICU follow-up appointment, at the same age. Charlie aced the developmental tests and had a blast showing off his skills and especially his wide-ranging vocabulary. He was doing spectacularly well for a 24-weeker (or a full-termer, for that matter) and his future looked so bright, with no hint of the cancer that lurked ahead. I try not to think too much about what Charlie could have become, given the chance to grow up -- it's hard enough just missing the amazing little boy that he was.
We saw many more NICU friends at the annual NICU reunion a week ago Sunday. Liam looks forward to the "hospital party" every year, and he and Jack had a great time dancing and eating and eating some more. They wore their orange Team Charlie T-shirts (see new pictures in the photo album) so Charlie could be with us in spirit. It's so hard to go without him, when he should be kicking up his heels with the other NICU grads. The grainy Polaroid at the top of this page is from Charlie's last reunion and one of the few precious photos we have of all three boys together.
We'll post an update after Jack's surgery tomorrow and let you know how he's doing. Thanks for checking in, despite the sporadic updates!
Tuesday, April 20, 2004 10:08 PM CDT
Well, I'm sorry that I didn't put up a post-surgery update last week, but it turned out that there was no surgery to do an update about, as Jack was too sick to go ahead with it. When I took Jack to Children's last Tuesday for what was supposed to be his pre-op physical, I knew there was no way that this wheezing, hacking child would get the green light for surgery. He ended up on steroids and antibiotics instead, and by the time his appointed surgery time rolled around the next day, of course, he was sprinting around the living room. He's doing great now and the surgery is rescheduled for May 5th. One benefit to the postponement is that we were able to get him back into the Children's day surgery center instead of having to trek to a different center in Lake Elmo. Even though it's just a low-risk hernia and hydrocele repair, we just feel better being at Children's, where we've received such good care.
We enjoyed a quiet, low-key Easter last week, and were happy to have a visit from cousins Matthew and Megan (and their parents, too). The kids wrote wonderful messages to Charlie, which we stuffed into some rainbow-colored plastic eggs and put in a basket for Charlie's garden at the cemetery. They decorated some beautiful eggs, too -- please take a look in the photo album to see the very poetic egg that Liam made for Charlie's basket. We took the basket to the cemetery on Easter, and it was nice to see the tulips we planted last fall starting to bud, although the daffodils and hyacinths seem to have gone AWOL.
Speaking of growing things, Charlie's dandelions are back! The week before Easter, Liam announced excitedly that Charlie had sent the first four dandelions of the season, one for each of us. His special plant, next to the foundation in the backyard, looks like it will be especially prolific this summer, and we'll have to be careful not to let the joy spread to the rest of the yard -- I think that duty will fall to Jack this year. Maybe next year, Charlie send a nice hydrangea or rosebush, but we'll take dandelions, in the meantime.
Tuesday, April 6, 2004 9:54 PM CDT
We have a date for Jack's surgery -- it will be Wednesday, April 14th, and we'll be glad to get it over with soon. He has been a little crabbier than usual and has had a serious relapse in fighting his pacifier addiction, but we'll help him get back on the wagon after he has recovered. A little comfort is a good thing right now. He's just getting over a virulent but short-lived stomach bug, and we're glad he chose to get it this week instead of next.
Liam's spring break flew by much too quickly, in a flurry of doctor visits and other errands. On Thursday, he served as my able assistant during my very part-time job, "teaching" a dozen two-year-olds during a moms' group meeting at a friend's church. Other than that, I believe the highlight of Liam's week was taking an unexpected detour to Arby's for lunch on Friday -- we had planned to go to the Minnesota Zoo, but apparently half the population of the state had the same idea, and we decided not to contend with the long, long lines.
We were blessed with a beautiful day for an early Easter celebration at Oma's and Opa's (Paul's parents') on Sunday. It was the first time I can remember that the kids were able to hunt for Easter eggs without their parkas and mittens on. We were also pleased to celebrate Great-Opa's 94th birthday and wish him good health and happiness in the coming year.
We have another important birthday to remember this week -- our special buddy, Addison (AJ), would have turned 5 this Friday, April 9th. Please visit his web page (see the link below) and let his family know you're thinking of them on this first birthday without him, a very hard thing to face. Thank you for your steadfast support!
Tuesday, March 30, 2004 9:55 PM CST
My plans for a lazy, leisurely spring break this week have taken a bit of a detour and we're spending a little more time in doctors' offices than I had anticipated. Jack had his usual quarterly screening appointment at the oncology clinic on Monday. He had his abdominal ultrasound and a thorough physical exam, and everything looked fine, as expected. But with some pretty strange timing, I was surprised to find when I changed Jack's diaper Monday evening that what looked like a sizeable hernia had suddenly popped out. His pediatrician took a look today and confirmed that it's a hernia. So we'll see Jack's urologist on Thursday and make plans for another surgery, sometime within the next couple of weeks. Luckily, Jack isn't bothered too much by the hernia right now -- it's just a little tender, and I'm sure he'll appreciate it when everyone stops prodding his privates. He has been such a good sport about the whole thing.
Liam is happy to have a break from school and enjoyed a brief visit with Grandma and Grandpa on Sunday and Monday. He was delighted to come home and find that a little orange kitten has moved into our backyard and has apparently adopted us. He (or she) is a very extroverted and affectionate stray -- so far, we've resisted feeding him, but pretty soon we'll need to make a decision about whether to encourage him, or pack him off to the Humane Society. Liam has been longing for a cat for a long time -- my allergies (and Liam's and Jack's too, I suspect) make a housecat out of the question, but this little guy might make a good backyard companion, after he's had his shots and a thorough check for fleas. I can't help wondering if Charlie somehow sent this little guy to be Liam's buddy, if only for a short time. Paul and I are still thinking it over, but tune in next week to find out the fate of the Oranges Kitty!
Tuesday, March 16, 2004 9:41 PM CST
Even though it's a new week and I usually put up a "new" photo of Charlie, I couldn't quite bring myself to take down this one yet. It's a favorite of mine -- Charlie is truly in his element, surrounded by his buddies at the Aveda preschool during the months that I was on bedrest with Jack. He had such happy times there and was always excited to go and see his friends and teachers. The car rides to and fro, alone with Daddy, were a huge bonus for Charlie, too -- I would love to have been able to listen in on those private conversations.
A few weeks ago, a friend asked me whether it saddened me that Charlie had spent time away from me, at ECSE preschool and Aveda childcare. I have absolutely no regrets about that -- in fact, for me, one of the most comforting things about Charlie's last year is that he had something of a life apart from me. I am so glad that, for at least a brief time, he was able to go out into the world on his own terms, ride the big, orange school bus, and experience a taste of independence. Charlie was not born to live in anyone's shadow. I think he knew more people than I did, and he certainly did more socializing than I did during those bedrest months! I think it was a great gift that he was able to make connections with so many people, children and adults alike, during his short time with us. He also brought so many incredible people into our lives -- therapists, teachers, nurses, doctors, and other extraordinary friends that we have been so lucky to have met on his journey.
Liam and Paul are making preparations for the Cub Scout Pinewood Derby on Thursday night, and Jack is trying not to hinder them -- or at least I'm trying to hinder him from hindering them. We'll let you know how that comes out. Thanks for checking in!
Tuesday, March 9, 2004 11:04 PM CST
Okay, I'm back. It was gracious of Paul to step in for a couple of weeks, and I appreciated the sabbatical. There was no particular reason for my absence -- just the usual daily details to attend to, combined with a profound lack of anything new to say.
The one bit of novelty in our lives is a lovely new kitchen floor. Last Sunday, Jack tripped over the crack in the old linoleum one too many times, and Paul, in a rare impulsive mood, announced that we should just run to Menard's and pick up the new self-adhesive tiles we've been talking about for about a year. I figured that we (we meaning Paul) would just peel off the old floor and slap the new tiles down during Jack's nap time.
Right.
The one-day lark quickly turned into a week-long project as Paul excavated layers of deteriorating gunk from the floor and discovered just how crooked our walls are, among other complications. Jack was an eager helper (see NEW PHOTOS in the album) but declared the stripped floor "yucky" and was delighted to see the new floor take shape. It is beautiful, indeed, and the only difficulty is that we are all having to re-learn how to cross the kitchen floor without having to pick our feet up over a gaping rift.
Liam continues to soldier on through piles of homework and is more eager than any of us for summer to arrive. He works so hard, without complaint, and I'm so impressed with his positive attitude, despite his very challenging workload. I told him so tonight after he wrapped up a really tough assignment, and he said, "Yeah, I just wish that life could be easier." Too true, but a heart-rending thing to hear from the mouth of an eight-year-old. I hate how quickly he has had to grow up, but treasure the wisdom that is growing in his sweet young heart. We are so ready for a carefree summer and hope to at least glimpse a little spring soon!
Wednesday, February 25, 2004 11:45 AM CST
Well, so much for the Tuesday update. I was hogging the computer again last night, so it's all my fault.
The week has passed fairly uneventfully, with just a very brief, very nasty cold for Jack as newsworthy events. He got the sniffles Wednesday afternoon, and by Thursday morning was wheezing and very miserable. We put him to bed that night and the next morning he was practically well.
We're all looking forward to Spring around here, and hope to have a bit of a taste of it this weekend as the temperature is forecast to be in the low 40's. We had a very wet snow fall Monday, and the boys and I made a big snowman in the back yard. It's possible that it will be the only snow left there by Monday. We can only hope...
All for now,
Paul, Terese, Liam and Jack
Tuesday, February 17, 2004 11:50 PM CST
With yesterday's President's Day holiday, Tuesday ran smack into us today. Terese pawned, err, transferred the weekly update to me, as I was happily watching Ice Age on the computer anyway. (High Def Digital is so much better than analog TV). So, the week's update is brought on home with an entire 10 minutes to spare ;-)
The past week has seen it's share of normal life - I was called about the church roof raining inside, Terese made several trips to the grocery store, Liam had a great time at his friend Michael's house, and Jack has now taken two falls after his bath - saving himself with his chin both times. We enjoyed a brief visit from my parents on Friday afternoon after they visited some friends in the Cities area. We also enjoy the home canning that usually finds it's way to our pantry after visits.
Liam is busy preparing for the upcoming Cub Scout banquet on Thursday night. We covered a lot of the requirements for the Wolf badge over the long weekend, including a home improvement project of installing a full extension pull out shelf so we can use the back of one cupboard so far.
Jack has started to learn some more words, but only Terese and I can decipher them right now. Zeus (Auntie Header's 70 pound Great Dane puppy), shoes and juice all pretty much sound the same. It's where he's pointing at the time that usually makes the difference, whether it's the back door, the refrigerator or the shoe rack. They especially sound alike with a big, fat lip. Well, all for now. Time for the usual five hours of sleep - ahhh, childrearing!
Thanks for all the encouraging words and prayers,
Paul, Terese, Liam and Jack
Tuesday, February 10, 2004 9:56 PM CST
Well, this week's update will be even briefer than usual, as Grandma and Grandpa Lewis are here for a short visit, and I'm typing in their would-be bedroom. There isn't much to report here -- the highlight of our week is sure to be the Poetry Reading and Chocolate Tasting Party at Liam's school on Friday. His class is finishing their units on poetry and Chocolate Fever (a great read, especially for those chocolate lovers among us) and they're capping off their studies with a chocolate celebration. As part of their spelling project, Liam wrote a lovely poem last week, entitled "Brothers." He'd be happy to share it, so I'll put it in the photo album, for anyone who would like a look. I hope your valentines are good to you and come through with substantial amounts of chocolate!
Wednesday, February 4, 2004 9:31 AM CST
P.S. I just added some new photos to the album this morning, to go along with last night's update.
Tuesday, February 3, 2004 10:34 PM CST
We'll see if my fingers have warmed up enough to type an update. We all bundled up and made a quick trip to the St. Paul Winter Carnival tonight and I haven't quite thawed out yet. The Ice Palace is beautiful -- Charlie would have loved all of the glowing colors. Liam had a marvelous time and Jack bounced around very happily too, until it was over. Poor Jack had a very uncharacteristic meltdown the minute we got into the car to go home, and didn't stop wailing until I tucked him into his cozy bed -- I guess the combination of cold toes, approaching bedtime, and sensory overload just did him in. Liam declared that it was the best thing we have ever done, even better than Disney World (except without the rides). I told him that he could store away the memory so he can tell Jack all about it someday, since Jack probably won't be able to remember it. Maybe he can edit out the part about Jack screaming the whole way home.
That's about it for this week -- we're just trying to stay warm and dig out from under the snow, and I hope everyone else is doing the same. And for those of you in warmer climes: try not to be too jealous of all our lovely snow. We'd be happy to ship some to you!
Tuesday, February 3, 2004 10:34 PM CST
We'll see if my fingers have warmed up enough to type an update. We all bundled up and made a quick trip to the St. Paul Winter Carnival tonight and I haven't quite thawed out yet. The Ice Palace is beautiful -- Charlie would have loved all of the glowing colors. Liam had a marvelous time and Jack bounced around very happily too, until it was over. Poor Jack had a very uncharacteristic meltdown the minute we got into the car to go home, and didn't stop wailing until I tucked him into his cozy bed -- I guess the combination of cold toes, approaching bedtime, and sensory overload just did him in. Liam declared that it was the best thing we have ever done, even better than Disney World (except without the rides). I told him that he could store away the memory so he can tell Jack all about it someday, since Jack probably won't be able to remember it. Maybe he can edit out the part about Jack screaming the whole way home.
That's about it for this week -- we're just trying to stay warm and dig out from under the snow, and I hope everyone else is doing the same. And for those of you in warmer climes: try not to be too jealous of all our lovely snow. We'd be happy to ship some to you!
Tuesday, January 27, 2004 8:06 PM CST
This week's update will be short and sweet, as we're all battling a nasty little cold today and in need of an early bedtime. Liam is in the midst of another week of grueling homework, and is putting the finishing touches on his science fair project. He deserves a vacation -- summer can't come soon enough for any of us!
Jack had his monthly AFP test on Monday, and had a marvelous time playing at the hem/onc clinic, as always. There were two very sweet-looking bald-headed kids in the waiting room this week, about eight or nine years old, and Jack climbed up in a chair next to one to check out the mini-DVD player in her lap. She was so patient with Jack as he pawed at her screen and chattered away at her, on a day when she couldn't have been feeling very good. I will be forever in awe of the way children cope with this terrible disease and manage to take it all in stride -- and somehow, their parents do, too.
Thanks for checking in on us!
Tuesday, January 20, 2004 11:05 PM CST
Enough about Jack -- it's Liam's turn in the spotlight, for a change. Liam has been working so hard in school -- Paul and I are continually amazed at how much homework has changed since we were in second grade, when it was non-existent. Last week, he had to design his science fair project, do the usual daily math, spelling, and reading homework, write a weather forecast using all of his spelling and vocabulary words, including "precipitation," "condensation," "temperature," and "evaporation," draw a weather map to go along with it, and deliver the forecast to the class. You won't hear me complaining about declining standards in the public schools -- I'm not sure I would have made it to third grade.
But Liam is coping with the workload well, and doesn't complain (much). He's especially excited about his science fair project, attempting to create anti-bubbles -- a curious physical phenomenon, exactly the opposite of bubbles -- in a variety of liquids. Paul has been sacrificing a lot of beer to the project, but it's all in the name of science. We were all tinkering at the kitchen sink yesterday, trying to find the best way to produce the elusive anti-bubbles, when Liam reminded us, with a little exasperation in his voice, that he's supposed to do most of the work himself. It turns out that he's the master at creating them -- he had better luck than either of us.
But Liam's life isn't all work, thank goodness. He and Paul bundled up on Saturday and had a great time at Cub Scout Polar Camp near Cannon Falls. Afterward, they stopped at Carleton and walked around campus for awhile, visiting our old haunts and checking out the new buildings, and then ate a sumptuous feast in the new cafeteria, which clinched Liam's college plans for good. We'll just have to start buying Powerball tickets and hope we hit a really big jackpot by the time he's ready to head to Northfield.
Liam continues to dote on Jack with as much pleasure as we do, if not more. Just as he was with Charlie, he's an incredibly patient and generous big brother. Liam was reading to me tonight as I was cleaning up in the kitchen -- not to be left out, Jack ran to get one of Liam's very grown-up chapter books, and then sat down next to him, cross-legged, on the kitchen floor, proudly poring over the pages. The sight of the two of them, sitting on the floor with their books, was a scene that instantly took me back to the days when Liam and Charlie spent so many happy hours sitting next to each other, quietly paging through piles of books.
I think it triggered the same memory for Liam, and as Jack climbed up into his bed to snuggle with him for a few minutes, he talked about how Charlie used to get into bed with him sometimes in the middle of the night, and about how he's still Charlie's brave big brother. It seems a little less painful and scary for Liam to talk about him now. He has been telling Jack about Charlie, and about what happened to him, trying to explain it to Jack as he attempts to make sense of it himself -- just as we are all trying to do. Liam so often expresses the wish that Jack could stay little forever -- implicit in that wish, I think, is the hope that Jack will stay healthy forever. I hate that Liam has had to confront illness and death, but I'm so proud of the courage and tenderheartedness he has shown in the midst of it all.
Tuesday, January 13, 2004 10:38 PM CST
Happy birthday, Jack! In your honor, I'm actually managing to do two updates in a single week -- amazing! I even put up fresh PICTURES in the photo album to mark the occasion.
It feels like a very long two years since Jack put in his early appearance at 31 weeks, after many concerted efforts to keep him from doing so. He has been, in so many ways, a beneficiary of the hard time that Charlie did in the NICU. We are lucky that Jack's life seems pretty uncomplicated by his prematurity, so far. His growth and development have been right on track, although we're looking forward to his vocabulary expanding a bit. His basic repertoire is "Mommy!" (to be used interchangeably for either parental unit), "Pease!", "See Zeus!" (Auntie Heather's puppy), "Go!" and, of course, "No!" or, more typically "NO NO NO NO NO NO NO!", not to be confused with "Noooooo?", which appears to mean "yes." He usually manages to get what he wants by pointing, grunting, gesticulating wildly, or -- when all else fails -- throwing himself to the floor and wailing pitifully. There are advantages to being the baby. He does seem to be adding a handful of new words each week, and someday we hope to understand them.
Last week, Jack had his usual quarterly appointment with Charlie's oncologist. His alphafetoprotein level (AFP, a potential tumor marker) continues to bounce up and down in a bi-monthly pattern, elevating to an almost-worrisome 20 but always going back down to a high-normal the next month. His ultrasounds continue to be perfectly clear and his belly, as he'll be happy to show you, is perfectly smooth. He needed a brief bout of weekly blood testing for neutropenia for a couple of months this fall, after his white blood cell count took a prolonged, unexplained dive. The tests ruled out any serious causes and his counts have returned to normal, so all is well. His health has been very good, not counting the nasty viruses that have circulated our way over the past few months.
Jack is, all in all, a happy, healthy, just-spoiled-enough little guy and we're so grateful to have him. I'm sure Charlie was a proud big brother, looking in on the St. Matthew's Christmas pageant this year, where Jack donned the woolly suit Charlie wore two years ago and carried on his legacy as a wandering sheep (see the photo of Jack in the album). We so wish Charlie could be here to share the joy of this day and squabble with Jack over the new Legos, but we trust that he's here in spirit, counseling Jack on how to milk his two-year-old status for all that he can. Thanks for checking in on us, and look for that prompt update next Wednesday morning! Really!
Sunday, January 11, 2004 10:22 PM CST
I guess it's still Christmas on Charlie's page -- I really wanted to share this photo again, a favorite from Christmas 2001. Paul, Liam, and Charlie worked hard making the festive faux fireplace in the background while I lounged on the couch a few feet away, on bedrest, trying hard not to have Jack until we were well into 2002. We could never have guessed it would be our last Christmas with Charlie. Although we wouldn't have chosen to miss out on our usual Christmas travels and traditions that year, it may have been a blessing in disguise that we had a quiet, leisurely holiday that year -- except for Paul, who was single-handedly running the household on top of dealing with a wife whose disposition and grasp on sanity had not been improved by three months of totally horizontal living. This year, our holidays were packed with places to go and things to do -- fun things, but exhausting, too. It's a bit of a relief to return to the usual routine.
One of my many New Year's resolutions is to update Charlie's page once a week -- judging by the date, that resolution hasn't been terribly successful so far, but now that we've settled back into our routine, I'm ready to make a go of it. I'm declaring Tuesday nights my new update time, and we'll see how long that lasts. At least I'll have reason to stick to the schedule this week, as we'll be celebrating Jack's second birthday this Tuesday -- that should be good motivation for me to return for a long-overdue Jack update. I hope the new year is off to a good start for everyone, and thank you for continuing to check in during my very long silence!
Sunday, December 14, 2003 9:43 PM CST
Well, it's about time we added a bit of Christmas spirit around here, and a long overdue update, as well. We officially kicked off the season with a trip to Paul's grandparents' place in Harmony last weekend for our annual snip candy-making session with the cousins. We suffered the usual singed fingertips as we snipped the molten candy into colorful little bits, but it's well worth the pain to keep up one of our favorite Christmas traditions. I guess that's emblematic of my general feelings towards the holidays now -- painful, but sweet, at the same time. Christmas will never be the same as it was with Charlie, of course, nor would we want to pretend that it is. We go about some of our holiday errands half-heartedly, essentially going through the motions. At the same time, we have sought and found some new ways to connect with the joy of the holiday season and to remember Charlie in the midst of all the busyness.
The season of Advent has been especially important to me this year, as a time of preparation and solemn but hopeful waiting. We made a special Advent wreath this year, incorporating some reminders of Charlie. When we got our Christmas tree this week and put up our decorations, we also decorated a tiny living tree and took it to the cemetery. Most of all, I have enjoyed buying a few presents for little boys who are the age that Charlie would be now. We did a little shopping in St. Cloud the day after Thanksgiving (I'm not sure what we were thinking!) and pulled a little wish list off a giving tree at Walmart -- it was for "Charles, age 5" and there was no way I could resist that opportunity! At the top of Charles' list was a piano -- I couldn't quite swing that, but it was such a joy to fulfill a couple of his other small wishes. It was really a gift to me.
Tonight, as part of the Compassionate Friends' Worldwide Candle Lighting event, we lit candles for Charlie and all the other children we mourn this year, that their light may always shine. It's our hope that the Christmas season will bring some light to all our lives this year -- you certainly bring light to our lives with all of your visits and encouraging words!
Tuesday, November 25, 2003 11:03 PM CST
Okay, the rainbow socks are back, by request! Thank you, Marceen, for sharing that beautiful dream of Charlie holding baby Connor. On the night before another internet friend's infant daughter died, I awoke from a rare and very vivid dream of Charlie, holding a baby girl and beaming with joy. I would not be at all surprised if greeting babies is one of Charlie's heavenly duties -- he was pretty taken with Jack (most of the time) and cousin Oliver, a nice, "quiet baby," as Charlie said. Charlie didn't get to exercise his big brother privileges for nearly long enough -- but, sadly, there are too many surrogate baby brothers and sisters for him to play with in heaven.
We're off to my parents' for Thanksgiving tomorrow, and I'm trying to get into the holiday spirit, but I'm finding it even harder than last year -- I'm finding it hard to feel much of anything. All of our emotions were so heightened last year, and thinking of ways to remember and celebrate Charlie's spirit during the holidays gave me focus and spurred my creativity. This year, Charlie just feels so far away. In another CaringBridge guestbook recently, a parent remarked that the first year after the loss of their child was the hardest, with all of the new "firsts." I'm not finding that to be true for myself -- it's the "seconds" that are so disheartening to me. But I know we'll figure out how to connect again with those feelings of closeness to Charlie, and work through this numbness. I am so thankful to all who continue on this difficult journey with us, even when -- ESPECIALLY when -- we go silent. Your words of encouragement mean more to us than we can ever express.
Please remember Noah's family in your prayers -- he passed away after suffering a great deal in his last few weeks. While they are glad that he is now at peace, we know that his family has a long road ahead of them. Noah's page is at www.caringbridge.org/mn/noahjay.
Sunday, November 9, 2003 11:13 PM CST
It has been so hard to write lately – I’m not sure why, but I guess I’ve been seized these past few weeks by a combination of busyness, fatigue, and, at the core, deep sadness. Beginning this second year without Charlie has brought new difficulties, different from the intensity of our grief last year, but hard to bear as we begin the cycle all over again, feeling farther away from Charlie than we did a year ago.
As the unofficial kick-off to the holiday season, Halloween was bittersweet again without our third little trick-or-treater. As Paul said, Halloween is such a Charlie thing -- he loved boldly venturing out into the world and knocking on strangers’ doors with the highest of expectations. We think this really would have been Charlie’s year – with a few months of kindergarten under his belt, his feeding tube would be quickly fading into the past and that sweet sackful of Halloween loot would take on a whole new fascination.
But the torch was passed to Jack this year. He thoroughly enjoyed his first official experience with trick-or-treating – he caught on quickly and toddled from door to door with his mittened hand held out in great anticipation. Liam worked hard designing his one-of-a-kind Glop-Monster costume (it’s okay if you don’t know what a Glop-Monster is; Liam tells me they’re very rare) and he looked very gloppy, indeed. Jack was slated to accompany him as a Baby Glop-Monster, but he wanted nothing to do with the Baby Glop-Monster attire, so he ended up going as a very contented cow, instead, which made it easy to accommodate the six layers of warm clothing he needed underneath his costume. Please check out the NEW PHOTOS in the album! If anyone can identify the dashing, devastatingly handsome secret agent in the second photo, we’d love to know who he is – I’m sure there are a few mysteries around here that need solving.
There is much more to write, especially since it has been so long since my last update, but my pillow is beckoning to me – Paul is working his final week on second shift, which he has been filling in on for the past few months, and we both look forward to getting a little more sleep as our schedules return to normal. So I vow to write more frequently – it always helps lift my spirits, and your encouragement means the world to us!
We ask your prayers for Noah Jay, a very courageous boy from St. Cloud who has been fighting leukemia for nearly a year and is engaged in an intense battle for his life right now. You can visit his Caring Bridge page at www.caringbridge.org/mn/noahjay. And our hearts go out especially to Addison's family as they come to terms with life without their beloved A.J. I am so weary of this terrible disease and the devastation it leaves in its path.
Friday, October 17, 2003 11:15 AM CDT
Happy birthday to Liam, who is 8 years old today! We celebrated with the whole family last Sunday (NEW PICTURES are in the photo album), which helped end Charlie's anniversary & birthday week on an up beat. We have always celebrated the boys' birthdays together on the weekend between them, and it was nice to continue that tradition. Liam designed his own birthday cake, featuring the Superboys, his comic strip superheroes -- check out the photo! We also had some rainbow "cake" for Charlie, concocted of many layers of whipped Jello. It was pretty cool, if I do say so myself -- Charlie would have gotten such a kick out of it, and probably would have even ventured a taste. But we trust they have pretty good birthday cake in heaven, too.
Liam's birthday has always fallen on MEA weekend, so he's bound to grow up thinking of it as a holiday -- he'll be in for a rude shock in 2005, when it will fall on a Monday, for a change. He and Paul are spending the day working on his new KNex Screaming Serpent roller coaster, until Paul goes to work this afternoon. This should be the last day for Paul to work on second shift, and then I'll have to get used to flying solo in the daytime again. Having two parents around for supper, homework, baths, and bedtime will be a welcome tradeoff, though. It will be nice to return to eating supper as a family, although that does mean I need to start cooking again on a more regular basis.
If you have a moment to wish Liam a happy birthday, I know he'd love it -- he so enjoys being "famous"!
Friday, October 10, 2003 9:19 a.m.
For Charlie, who concluded his prayers every night with the same gleeful words, "And thank you for the Cat in the Hat book!":
"Today you are you! That is truer than true!
There is no one alive who is you-er than you!
Shout loud, 'I am lucky to be what I am!
Thank goodness I'm not just a clam or a ham
Or a dusty old jar of sour gooseberry jam!
I am what I am! That's a great thing to be!
If I say so myself, HAPPY BIRTHDAY TO ME!"
-- Dr. Seuss, who can read the story to you in person today, if you ask him very nicely!
Tuesday, October 7, 2003 11:49 PM
Despite the sad date, it wasn’t hard to feel some joy on such a warm and sunny October day, working (or, more accurately, watching Paul work) in Charlie’s garden this afternoon. We planted lots of spring bulbs and some bright mums to enjoy for the rest of the fall, and found places for five little pumpkins that we grew in our garden this summer – check out the new PICTURES in the album!
It has been so important to hear others’ recollections of that wrenching day, one year ago. It isn’t easy, of course -- Liam sometimes confides that he wishes he didn’t have to remember Charlie, and I can understand the temptation. If it were possible to forget or “put it behind us,” life would certainly be simpler. But to deny the grief and sadness would also diminish our sense of the great joy that Charlie brought to our lives. Immediately after Charlie died, we thought about how things might have been if his life had ended in his early days in the NICU, as it very nearly did through several grave crises. Would it have been less cruel to lose Charlie if we had never had the chance to really know the utterly unique, eternally loquacious, indomitable little sprite that he was? It wasn’t hard to come up with an answer to that one – not a chance! We wouldn’t trade away a moment with Charlie, and the intensity of our grief goes hand in hand with the vividness of our memories. Not surprisingly, Shakespeare (himself a grieving father) said it best:
“Grief fills the room up of my absent child,
Lies in his bed, walks up and down with me,
Puts on his pretty looks, repeats his words,
Remembers me of all his gracious parts,
Stuffs out his vacant garments with his form.
Then have I reason to be fond of grief.”
-- William Shakespeare, King John
I’ve found much consolation in literature lately. One of the books I read on our vacation is Thornton Wilder’s novel, The Bridge of San Luis Rey, a beautiful and haunting tale of the sudden, seemingly random deaths of five people when a bridge collapses in 18th century Peru, and a monk’s search for meaning in the disaster. As he delves deeper into the mystery, the only meaning he seems to find arises from the bonds of love that tie the characters to one another and to those they have left behind. The book concludes with a stunningly beautiful assessment of the mystery: “There is a land of the living and a land of the dead, and the bridge is love, the only survival, the only meaning.” We keep building that bridge, trying to keep it strong and unshakable. It’s worth the effort, and the pain.
Both Paul and I have felt that the anniversary itself hasn’t been as hard as the anticipation of it. In so many ways, it’s a day just like all the others – a day without the sunshine of Charlie’s presence, but brightened immeasurably by the love of all those who care about us. Thank you for the outpouring of support on this difficult day. Now, here’s the favor that I’d like to ask of you – as we remember the anniversary and celebrate Charlie’s birthday on Friday, we would love to hear either your memories of Charlie, OR the story of a loved one you have lost, and how you maintain your feelings of connection with them. It’s amazingly helpful to hear other people’s stories. We are grateful, as always, for all the guestbook entries, phone calls, e-mails, letters, and other remembrances, this day and EVERY day!
Sunday, October 5, 2003 10:16 PM CDT
A tough week is upon us, with Charlie's first anniversary on the 7th and his birthday on the 10th -- stay tuned, because I'll need to write this week, and I have something to ask of you, too! More to come, soon...
Wednesday, September 24, 2003 11:57 PM CDT
Paul and I are home from our Canadian adventure and settling back into reality, a little reluctantly. The trip was exactly what we needed -- aside from some chilly weather and the cancellation of our much-anticipated dinosaur dig due to some unseasonable snow, it was everything that we hoped it would be. We'll have lots of pictures and stories to bore you with, as soon as this very busy week is over and we've eased back into what passes for normal life.
I should have written an update on Saturday, when I was still glowing from that vacation high, because the return has been difficult for me. I think we somehow felt Charlie's absence a little less when we were away from all three boys, as if our separation from him were the same -- just a temporary phase to be endured. In some irrational way, I think we half-expected him to be here when we were reunited with Liam and Jack again.
Today was the first in a series of tough dates on the calendar, the anniversary of Charlie's resection surgery -- a date that we looked forward to last year as Charlie's day of liberation from his tumor, and dreaded at the same time, as we confronted the serious risks of the operation. A year has now passed since we last heard his sweet voice, felt his small hand squeeze ours, and looked into his bright eyes. Although the anniversary of his death is still to come, this is the day we truly lost our son.
It's still a great comfort to remember what a happy morning Charlie had as we waited for the surgery to begin -- the picture above is a "new" one from that day. Charlie was delighted to have both of us to himself as we played, chatted, read books, and cuddled in the waiting room. The operating room was running a little behind schedule that morning, and what a blessing that turned out to be, to have those extra moments together. What a wonderful world it would be for our children -- and for us -- if we could remember to cherish those mundane moments with them, sitting in waiting rooms or standing in line at the grocery store.
Another comfort for me today was taking time to give blood again. Charlie received an astonishing number of blood products throughout his life, from the thimblefuls of blood transfused in the NICU, to the many tranfusions of platelets and packed cells during chemo, and finally to the constant, massive infusions of blood, platelets, and other blood products in surgery and throughout his final days in the PICU. For anyone who is eligible to donate, one of the best ways I can think of to honor Charlie's memory and lift a little of the sadness is to roll up your sleeve and make sure that the priceless gift of blood is there for the little boys and girls who are fighting for their lives right now.
Jack and Liam updates are long overdue, and I won't forget those boring vacation photos, but it's way past my bedtime and Jack has been waking up at 5:45 every morning, just to make sure we haven't abandoned him again. Thanks for sticking with us!
Saturday, September 13, 2003 2:54 PM CDT
Okay, we're really going this time -- once again, we're on our way out the door for the second iteration of our 10th anniversary trip/honeymoon/vacation to the Canadian Rockies, this time with multiple copies of our birth certificates in hand. We are looking forward to a quiet week together and are glad our cabin has a fireplace, as the forecasted high for Wednesday in Banff is 41 degrees (we won't talk about the lows). I guess we won't quite be able to duplicate that trip we had planned for August, but it will be lovely no matter what the weather.
Our hearts were broken again this week, as our dear little buddy, Addison (A.J.), passed away on September 9th at 4 years and 5 months of age, after mightily battling hepatoblastoma for a year and a half. A.J. was diagnosed about two months before Charlie and their liver resection surgeries were done within days of each other. Our families have traveled along two very different but parallel paths this year. Please pray for comfort for his parents, Deb and Dave, and especially his big sister and brother, Ashley and Austin.
Tuesday, September 2, 2003 9:38 PM CDT
It was a bittersweet day as all the neighborhood children headed back to school. Liam was so excited to begin second grade and we know he's off to a great year. Our joy at this new beginning is tinged with sorrow, though, in remembering that this would have been Charlie's first day of kindergarten in the four-year-old program, where he had looked forward to following in his big brother's footsteps. It is hard to think about all that Charlie wanted to learn and do... we have to settle instead for the picture above, an old favorite from the first day of school two years ago, just before Charlie's third birthday. He was about to begin the ECSE preschool program at Crossroads (Liam's school then) and strapped on his backpack for the official first day of school as a dress rehearsal for his own first day, when the big orange bus came just for him! There are more pics from that day in the photo album link. It was a golden time, just a few weeks before things went awry with Jack and I had to go on bedrest. I am so glad that Charlie had many happy days at school with loving teachers and lots of rides on the bus, but wish he could have had so many more.
Thursday, August 21, 2003 11:07 PM CDT
Well, scratch that last update -- we've had a little change of plans. When Paul declared a couple of weeks ago that NOTHING could stop him from getting on that plane to Canada, I should have known then that our anniversary trip was doomed! We dropped off Liam and Jack at my parents' on Friday night and came home to do some leisurely cleaning and packing on Saturday, and left for the airport at 6:30 in the evening, with plenty of time to spare before our 9 p.m. flight. We suavely handed over our luggage, our tickets, and our driver's licenses to the e-ticket check-in person, who then asked, "Do you have your birth certificates or passports?"
Uh-oh. We were a bit stunned, having checked the Canadian government's entry requirements and several up-to-date, post-9/11 guidebooks, all of which informed us that a driver's license was sufficient for entry into Canada. Come to find out, that's not good enough for Northwest Airlines, which (we now know) faces huge fines by the Canadian government if they transport travelers who are turned away at customs and have to be sent back for any reason. Somehow, in compulsively checking and re-checking all of our plans and reservations, we missed the fine print informing us that Northwest's policies are more stringent. The check-in supervisor rescheduled our flight to the next morning and sent us home to look for birth certificates we knew we had no chance of laying our hands upon.
We did have the boys’ birth certificates handy, so we toyed briefly with the idea of sending THEM to Canada instead, or forging ours, but decided that federal prison was not high up on our list of desirable vacation destinations. So Paul pulled dozens of ancient boxes out of storage and we pawed through dusty artifacts of my childhood and college years. We did find my passport (which expired 5 years ago), some great old love letters, and some misplaced artwork of Charlie’s, so that was worth the sneezes and the brief run-in with a confused bat. Not surprisingly, no birth certificates materialized, so we cooked up a great plan to circumvent Northwest’s policy – we would fly to northern Montana and drive up to Calgary, skating in under the more lenient entry requirements. I called Northwest at midnight and the ticket agent cheerfully rescheduled us on a flight to Kalispell. “That’ll just be $1,045 extra per ticket, plus the $100 change fees,” she chirped. Whoa! Let’s just back up a step or two.
On to Plan C, which is working out brilliantly. We have rescheduled the entire trip to mid-September, allowing plenty of time for my birth certificate to arrive from Iowa (Paul got his first thing Tuesday morning). Fortunately, we have been able to re-book everything we had planned and haven’t lost a cent in deposits or change fees -- aside from a little wounded pride, everything's just fine. We went to the airport in person on Sunday morning and a compassionate Northwest agent convinced her supervisor to waive the $100 per ticket rescheduling fee – I see some Aveda products in her future. We even got an extra mini-vacation out of the deal – we had a quiet getaway at my parents’ cabin on Gull Lake Sunday night, did some biking, ate some good food, and picked up the boys on Monday afternoon.
So tonight, it’s official – ten years ago today, Paul and I were married. As our family and friends gathered that evening SO long ago, this is what they prayed for us (according to the Book of Common Prayer – I was probably too nervous to really absorb it that night, let alone remember 10 years later): “Give them wisdom and devotion in the ordering of their common life, that each may be to the other a strength in need, a counselor in perplexity, a comfort in sorrow, and a companion in joy.” We could have asked for no better prayer to get us through our first 10 years together. We sealed the deal that evening with Shakespeare’s Sonnet 116, which includes the immortal lines:
“Love is not love
Which alters when it alteration finds
Or bends with the remover to remove:
O no! it is an ever-fixed mark
That looks on tempests and is never shaken...”
We have looked on a few tempests in the past 10 years – enough to know that a postponed vacation barely qualifies as a light drizzle. Thank you for sticking by us – we couldn’t have gotten this far without all of you!
Saturday, August 16, 2003 6:17 PM CDT
Paul and I are literally on our way out the door for the airport, headed to the Canadian Rockies for a combination 10th anniversary trip/honeymoon-we-never-had-the-time-or-money-to-take. Liam and Jack are having a vacation of their own at Grandma's & Grandpa's (we think it will not be much of a vacation for Grandma & Grandpa!) We'll tell you all about the trip when we return, well-rested and ready for the Minnesota State Fair, we hope!
Sunday, August 3, 2003 9:21 PM CDT
Now that a solid week has passed since our Relay for Life, I might be able to put a coherent sentence together -- my tail was dragging all week long. I've been mourning my lost youth and waxing nostalgic about how quickly I bounced back from my frequent all-nighters in college, working on the Carletonian or tackling a term paper 12 hours before the deadline. It seemed so much easier then – or it could just be that Jack is less accommodating of naps than my first-period art history professor.
The Relay for Life was well worth the sleep deprivation, though. Pictured above (there are more photos in the album link) is about half of Team Charlie – altogether, about 20 hardy souls walked (and ran!) with us through the night, and many more gave behind-the-scenes support through their contributions and other help. We exceeded our team goal and raised more than $1600 for the American Cancer Society, so far – not bad for a first effort!
The Roseville event was very small and intimate, with just three teams participating. One of the other teams was made up of Hamline University students who are part of a splinter group of the Society for Creative Anachronism -- apparently too eccentric even for the SCA, if that’s possible. They were a great bunch and kept things lively with sporadic displays of medieval combat -- Liam had a great time with their foam weapons. Jack was just thrilled to have access to an open field, and toddled around the track with glee. We tucked him into the tent after ten, but he rejoined the party from about midnight to 4 a.m. and was more awake than any of us. Storm clouds skirted the field all night long and there was a lot of ominous lightning before dawn, but the storms passed right by and we were treated to a beautiful sunrise as we packed up the tents and called it a night.
Many thanks to team members Alicia, Natalka, Robyn, Tim, Matt, Matt’s neighbor (whose name we can’t remember right now – so sorry!) Lisa, Brandon, Mason, Ashley, Sue, Craig, Calvin, Rosalyn, Bern, Neektu (sp?), Chris, and Mom & Dad Kiehne. Big thanks to my parents for providing our Team Charlie T-shirts – we glowed all night long, brighter than the luminarias on the track.
We wish that our team captain, Auntie Heather, could have been with us, but we’re just glad that she’s safe and sound after a military rebellion in Manila, where her hotel was seized by a rogue faction of the armed forces and she was held under house arrest. After some tense hours, she and her co-workers were released, and then spent a few days in Singapore before returning to Manila to complete their business. We’re expecting Heather back this week, with NO more interesting stories to tell her grand-nieces and –nephews, please!
We need special prayers for our friend, A.J., who has been battling hepatoblastoma for almost a year and a half and has been through many, many difficult treatments and surgeries. His family has received devastating news -- his cancer has spread again, and his fight has just become much harder. Hope is fading, but is never lost. If you can, please visit A.J.'s page by clicking the link below, and let his family know that they are not alone. Thank you for caring!
Saturday, July 19, 2003 5:02 PM CDT
Here's a quick update as Liam, Jack, and I are on our way out the door to my parents' house for a week. Paul will join us tomorrow for the dedication of Charlie's Rainbow Playground at Westwood Community Church in St. Cloud, given by my parents in Charlie's memory. The Westwood community has been faithful in supporting our family with prayers, love, and encouragement throughout Charlie's life and beyond, and we are so pleased that his playground will bring joy to the many children who will play there.
The boys and I will be returning home on Friday, just in time for the Relay for Life in Roseville. Thanks to all who have expressed interest in pledging or participating with us! If you haven't heard from us yet, we'll be getting in touch with you in the next day or two with more details. Team Charlie is gearing up for the event, and we promise pictures on the web page soon!
Friday, July 11, 2003 10:54 PM CDT
I can hardly believe it -- two updates in one week, but we have some good news we just have to share. Dr. Messinger called last night to tell us that Jack's AFP has fallen by more than half, to 8.9, which brings it to within normal limits for the first time. This isn't exactly an all-clear, and he still wants to follow Jack monthly, but it sure beats staying the same, or going up. We were able to cancel Jack's hem/onc appointment for next week -- we'll have another blood draw at the beginning of August, and then the next ultrasound & blood test in September. Many thanks to all who hoped and prayed with us that Jack's AFP would do a nosedive!
The other important item is that Team Charlie is getting into full swing for the American Cancer Society's Relay for Life fundraising event on Friday, July 25th. If you're as tough as a buffalo (and even if you aren't), we need you! We'll be running, walking, toddling, or staggering around the track at the Roseville Area High School from 7 p.m. Friday to 7 a.m. Saturday, and we need sponsors to pledge donations for cancer research, as well as people to walk/run/limp along with us.
HERE'S HOW YOU CAN HELP:
PLEDGE a donation by sending an e-mail to us at terese@visi.com or by mailing a donation (checks should be made payable to the American Cancer Society) to:
Terese Lewis & Paul Kiehne
116 Rose Ave. W.
St. Paul, MN 55117
JOIN US for the event by sending an e-mail to terese@visi.com, by dropping us a line in Charlie's guestbook, or by calling us at 651-487-6404.
Here endeth the brazen plea for donations -- we promise we'll only do this once a year! We are so thankful for all that you have done for us already and for your constant encouragement and support.
Sunday, July 6, 2003 10:59 PM CDT
We've been swept away by this glorious summer, which is already slipping by too fast. Jack and I spent the afternoon shopping for toddler shoes, and I was dismayed to see "Back to School" displays everywhere -- seven stores later, we still haven't found sandals that fit Jack's chunky little feet, but I imagine the shelves will be stocked with snow boots by August, so perhaps we needn't bother having summer. But we've been enjoying it immensely, despite the lack of proper footgear.
Beginning with the anniversary of Charlie's diagnosis on June 19th, I had planned to revisit each day's journal entry from last summer and reflect on all that Charlie endured during those last long (but too short) months. Those days were so packed with information to absorb, strategies to devise, and details to juggle that we barely had time to catch our breath, and yet those four months from Charlie's diagnosis until his death felt longer than any decade of my life so far.
I just haven't had the heart, though, to wade back into all of those journal entries yet. Instead, Jack has been pulling me outside, literally -- he grabs our fingers and tugs until we get up and follow him as he toddles to the door, where he points, whines, grunts, gestures wildly, and uses any other means of communication he can think of to convince us to take him outside into the sunshine. And it hasn't taken much to convince me -- normally, I would be cowering in the air-conditioned house by July, but the (mostly) beautiful weather this spring and summer have been like a big gift just waiting to be unwrapped by our family. Liam, Jack, and I, have been frittering away our days doing nothing in particular, and Liam has declared it "the best summer ever." We have completed some long-planned landscaping projects and have been busy in the garden, where Paul's spectacular tomato plants are showing signs of preternatural intervention -- we'd like to think that Charlie is having a hand in that. After the boys are tucked in, I've been retiring to bed with a much younger man by the name of Harry, who possesses certain magical qualities -- unfortunately, they aren't magical enough to keep me awake for more than 15 minutes, but I'll muddle (or Muggle) through somehow.
We do have some irons in the fire, though -- July is turning out to be a busy month, with a few important events pulling us away from our rigorous slacking-off schedule. On July 20th, we'll be dedicating a wonderful new Rainbow playground that my parents have had built in Charlie's memory at their church, and on July 25th we'll be breaking out our tennies, flashlights, and tents for the American Cancer Society's Relay for Life event in Roseville. Team Charlie is coming together under the direction of Captain Auntie Heather -- details will be coming soon! We'll need walkers/runners, sponsors, and well-wishers, so you can be sure I won't let so much time pass before my next update. Thanks for checking in!
Thursday, June 19, 2003 11:48 PM CDT
One year ago today...
The movies always seem to get it wrong -- the big, definitive moment of cancer diagnosis, when an avuncular doctor leans gravely over the antique mahogany desk in his tastefully appointed office and delivers the shocking news to bewildered parents who promptly dissolve into tears and cling to each other as they absorb the shock. In reality -- for us, anyway -- the revelation came less melodramatically. It began with the strange bump on Charlie's abdomen that I spotted as we were going through the nightly bedtime routine on Thursday, June 13th – Paul was getting Charlie’s pajamas on and I glanced up from feeding Jack to see a weird shadow on his tummy. “What the heck is THAT?!” were my exact words, I think. Was it a trick of the light? No, it was there, solid and lumpy, and definitely new. We wondered if it could be some kind of bowel obstruction or impacted stool, resulting from the changes in Charlie’s diet as he was working hard toward weaning off his feeding tube and was surviving on Funyons and reluctant sips of super-fortified chocolate milk. But he had been very regular in the elimination department, so that seemed unlikely.
Could it wait 'til morning, or should we rush him to the emergency room? And which of Charlie's specialists should we call -- gastroenterologist? nephrologist? surgeon? Charlie wasn’t in any pain and was feeling absolutely fine, so we decided to let him get a good night's sleep and start with his family practice doc first thing in the morning. The on-call doc suspected an incisional hernia from a previous surgery, which led to an appointment with Charlie’s surgeon the next day. He ruled out a hernia, and wondered about an obstructed kidney – perhaps one of the calcifications in Charlie’s damaged kidneys (an after-effect of the heavy diuretics he needed in the NICU) had broken off and was causing the mass. He recommended a renal ultrasound, and then came the weekend, and four frustrating days of waiting and increasingly anxious phone calls to get the ultrasound scheduled.
When Charlie’s nephrologist told me over the phone on Monday that he doubted his kidney could be the culprit because he would be in a great deal of pain, the true worry set in – I was reading a lot about painless abdominal masses in children, and none of them sounded good. The diagnosis I feared most was neuroblastoma, which carries a poor prognosis when diagnosed in a child as old as Charlie. I wondered about hepatoblastoma because I knew a handful of ex-preemies who had battled it and I was aware of its prevalence among children born prematurely. Two nights before the ultrasound, I lay awake, spinning out all the nightmarish scenarios. In my mind, I buried Charlie that night. Once I had contemplated (and cried all night over) the worst horror I could imagine, I felt a strange sense of peace and was able to face the appointment with some degree of calm.
The kidneys looked clear, the radiologist said as she looked at the ultrasound on Wednesday, but there was a mass in the liver. “Well...okay,” I thought, “probably hepatoblastoma -- we can deal with that -- Charlie can LIVE with that.” The two hepatoblastoma patients I knew of were both survivors, and I had read that the cure rate was about 85 percent, approaching 90 – I liked those odds better than anything else I had read about. We were sent out to the waiting room, where Charlie zoomed over to the Nintendo console to play a Pooh game. The receptionist came out to tell us that it wouldn’t be much longer. “They’re ALL in there, looking at the ultrasound,” she marveled, naming some of the doctors who had cared for Charlie throughout his already lengthy “career” at Children’s. Charlie’s former pediatrician walked through and smiled, followed by his surgeon, who watched Charlie play for a few moments before he said, “Well, there’s a tumor in his liver,” as calmly and matter-of-factly as if he were remarking on the weather. “It just grew right under our noses – it’s bigger than when I first saw it on Friday – it seems twice as big already,” he said. “We’re going to do a CT scan to get a better look at it and see what we’re dealing with, and you’ll meet with one of the oncologists today – I’ll see who’s on call. We’ll need to do surgery soon – tomorrow, if I can fit it on the schedule – to do a biopsy of the liver and take it out, if we can.” He left to perform a surgery, and we remained in radiology, where Charlie bravely endured the starting of the IV for the dye study. He was scared but held very still for the CT scan, with the help of the Buzz Lightyear bubble-maker, which anointed him with a cascade of bubbles as the machine whirred away.
It was a long, long day – too long to tell about it one journal entry, so I’ll continue the saga another day. Returning to the present for a moment, Charlie’s oncologist has decided to follow Jack’s AFP more closely, checking it every month rather than every three months, and we’re glad about that – more information always seems preferable to less information, even if the picture doesn’t become clear right away. After more investigation, we decided not to go any further with the genetic testing at this point – isolating the FAP mutation is a much more complex process than Dr. Messinger first realized and would require extensive genetic counseling at the U. Since Paul’s family history doesn’t fit the typical profile and the results wouldn’t affect the screening protocol anyway, we’ll leave that alone for now. On Monday, we’re hoping Jack’s pediatrician can get to the bottom (no pun intended) of his elimination difficulties, and then Paul and I are meeting with one of the hospital’s child psychologists to talk about how Liam is doing and decide whether counseling would be helpful for him. We’ll keep you posted – thanks for hanging in there and reading this far!
Friday, June 13, 2003 11:13 PM CDT
I should have known better than to schedule Jack's oncology check on Friday the 13th. Jack is being followed by the hematology/oncology clinic because of the link between prematurity and hepatoblastoma, as well as any potential risk as a sibling. At Jack's first screening appointment in March, his alphafetoprotein (AFP, a protein secreted by the liver which, when higher than normal, can serve as a marker for certain tumors) was ever-so-slightly elevated, at 11 –- less than 10 is acceptable, and 6 or less is normal. Dr. Messinger had felt that Jack's slight elevation was probably residual from his prematurity and expected it to fall to within normal limits by June. "I'll be very surprised if it doesn't go down," Dr. Messinger said in March, "but if it does something crazy, like doubles, then we'll worry."
Well, it doubled. So now we worry -- a little. Although Jack was uncooperative – to put it mildly – during his abdominal ultrasound today, they got pretty good images and his liver, kidneys, and bladder all look fine – perhaps the good luck penny that Liam found on the way into the clinic mitigated the jinx. Dr. Messinger did a very thorough physical exam and sent Jack for a chest X-ray and more labs to check liver function and some other indicators. We’re also waiting for the results of some genetic testing he had ordered earlier, before the AFP results were known, based on some family history of colon cancer, a form of which is linked to hepatoblastoma. At this point, Dr. Messinger is mostly working to rule out germ cell tumors, which are often associated with mild AFP elevations like Jack's. In hepatoblastoma, AFP levels are usually astronomically high -- Charlie's was 256,200 when he was diagnosed and many patients' are much higher -- so that's not really the concern right now.
So, what does this all mean? There are a lot of contradictions here -- it's very unlikely that the AFP is false, but also unlikely that there's anything seriously wrong. It is impossible to ignore the fact that it is very unusual for AFP to have doubled in a child Jack's age, though, and there are no *good* reasons for it to be that high. The one small, red flag that has my attention is that some germ cell tumors, such as childhood testicular cancer, are linked to hypospadias, the urinary tract defect that Jack was born with – they are believed to be spawned by the same endocrine disruptors in the environment. Of course, we’re all completely paranoid -- if Jack weren’t being followed by the hem/onc clinic for a completely different cancer, we would have no clue what his AFP value is and no reason to suspect anything, so we’re trying to keep it all in perspective. Dr. Messinger is concerned, but we know him to be an excellent worrier and that’s why we’re glad he’s in Jack’s corner, even if it means running down a few blind alleys before we can breathe easy (man, can I mix those metaphors, or what?)
When Charlie was born, Paul and I quickly learned how to worry and not worry at the same time – it’s an art, and we’re pretty much at home with the paradox. It’s the same sense of paradox, I think, that allows us to still find beauty and joy in a world bereft of Charlie. Life is bitter; life is sweet. I knew those philosophy courses I took at Carleton would come in handy for something. Thanks for checking in – we won’t have test results for another two weeks, but we’ll try to think about something else, in the meantime. Maybe I’ll have Liam write the next update – he doesn’t have much on his plate, except the heaps of food that keep disappearing down his hollow leg!
Sunday, June 8, 2003 11:58 PM CDT
Sorry I've been slacking off on the journal -- I just had lots of work to do last week, amidst the end-of-school events, and in my free moments, the honest-to-goodness genuine spring weather has been luring me outside to (*gasp*) work in the garden or tackle other outdoor projects. But soon enough the heat and humidity will descend and I'll take refuge in the A/C -- you can expect much more frequent entries then.
Only two more days of school to plow through, and then we'll be able to close the book on this difficult school year. Emotionally, Liam has had a rough time lately and really needs a long, relaxing summer to unwind his thoughts and sort out all that has happened this year. When I think of all the stresses he has had to absorb in the years since Charlie was born, let alone these past eight months, I'm amazed at his resilience. We are so proud that Liam is finding his way through this terrible grief, but we feel that we need to do more to help him cope with the storm of feelings that continues to rage in all of us, and we're hopeful that some counseling through the hospital's bereavement program will be helpful to him. If you have some encouraging words for Liam, I know he would love to hear them -- when I show him the guestbook entries that mention him by name, they really make his day.
Despite everything, Liam has accomplished great things in first grade and has handled the transition to the gifted and talented school very well. It's such a pleasure to listen to him read -- right now, he's reading Moby Dick to us (the abridged version -- after muddling through a hasty explanation of cannibalism required after reading 20,000 Leagues Under the Sea, I think we'll wait a few years before putting the authentic text in his hands!) He does all of the voices with great gusto, and seems to have a special knack for reading poetry. It's a thrill to watch him discover the boundless adventures that reading can take him on. Some of my sweetest memories of last summer are of spying on the boys as they sat on the floor of their bedroom, with heads together as they pored silently over their books, and of eavesdropping on the baby monitor as Liam read to Charlie, book after book after book. Charlie's appetite for stories was insatiable, too, and I need to remind Liam of the priceless gift he gave to Charlie by reading to him.
Next time, it will be Jack's turn in the spotlight. It's already time for his three-month hepatoblastoma check again -- tomorrow we test his AFP levels, and then go back to the oncology clinic on Friday for an ultrasound and exam. His AFP was just the slightest bit elevated last time, but we expect that by this time it will be within the normal range. In the meantime, I added a new Jack photo to the online album, in keeping with our gardening theme, but it's not for those who are disturbed by images of small children in dire need of a bath (Grandma, consider yourself forewarned!)
Monday, June 2, 2003 10:38 PM CDT
*yawn* I've been screwing around with new photos and now I'm too sleepy to write an update, but come back soon -- in the meantime, you can check out the beginnings of Charlie's rainbow garden in the photo album!
Tuesday, May 20, 2003 11:12 PM CDT
I’m still here...just absorbed in a lot of mundane things lately and not feeling that I have much to say. I think we’re all hoping for a more carefree summer this year, and it can’t come soon enough. Liam is looking forward to his first official summer vacation -- things at school seem especially busy right now as the year is drawing to a close, punctuated by a dizzying succession of field trips and special events. Liam and his classmates gave a lovely vocal performance on Grandparents’ Day, and he’s looking forward to exhibiting one of his many talents at the final first grade “performance day” of the year. His initial idea was to haul in our electronic keyboard and perform an interpretive dance to the “Theme from Peter Gunn,” the choreography for which I can only describe as breathtakingly original. We delicately suggested that the keyboard is a little too expensive and fragile to tote to school, so Liam scrapped that idea and is still waiting for inspiration to strike. His latest plan is to show off his artistic talent by incorporating drawings of some of the superheroes he has invented, or providing a demonstration of his dinosaur-drawing technique. He might become the first performance artist in the history of the first grade.
Paul and I have been exercising our own creativity in working on the design for a suitable rainbow garden for Charlie at the cemetery. I'm looking forward to having something growing there to make my visits feel more purposeful. I hope I can manage to keep his small patch weeded and watered, a duty I think Charlie will appreciate all the more because I hate gardening. My previous contributions to our gardens at home have consisted mainly of picking out likely-looking plants, gingerly helping install a few of them, and then watching Paul toil in the dirt and heat all summer, enjoying the fruits of his labor while I languish inside, enveloped by the cool ministrations of the central air conditioning unit. I fancy myself more of a conceptual gardener -- I've been poring over landscaping books, trying to choose some permanent plantings to buy with some of the memorial gifts we received. Charlie’s choice would be tomatoes or sunflowers, of course, and we will be planting those this spring with fond thoughts of him, but we’re looking for something a little more permanent, too. As we wait for inspiration, I’ve changed the photos in the photo album – I needed to see Charlie with his beloved tomato plants again, and added a new photo of Jack, who is staggering around with great confidence now. Thanks for your patience and your faithfulness in thinking of us!
Sunday, May 4, 2003 10:55 PM CDT
Paul's hernia surgery went fine, by the way! Sorry to leave you all hanging -- I thought I'd just let the suspense build for a week or so, because goodness knows we haven't added enough enough drama to your lives. The surgeon was able to do the repair laparoscopically, so Paul's recovery has gone pretty quickly. He is almost pain-free now, except when Jack kicks him in one of his incision sites. I think Jack pushed him to the limits of his endurance today -- I've been locked away in the den, working, so Paul and Jack have had to get re-acquainted.
Saturday was the annual NICU reunion at Children's-St. Paul, always a triumphant occasion for us in the past, but so bittersweet this year without Charlie, who was such a stellar example of the possibilities residing in those tiny, fragile bodies, fighting for life in their isolettes. But Liam and Jack wore their buffalo T-shirts in Charlie's honor (thanks, Sue!) and Liam enjoyed finding the boys' pictures on the commemorative "quilt" that will hang outside the NICU this year. It was good to see how Charlie's fellow NICU-mates have grown, and to celebrate Jack's accomplishments, which are nothing to sneeze at. It's easy to forget that we came so close to losing Jack -- we're so thankful for his rosy, round cheeks and ever-ready grin, and especially for those lively blue eyes, so much like Charlie's.
It has been a banner week for Jack -- at just a little less than 16 months, he has finally begun walking (swaggering, really) and he's pretty thrilled with his newfound power. He still crawls and cruises when he wants to get somewhere quickly -- he has been using those lesser forms of locomotion for more than six months now, so he has become pretty efficient -- but he toddles a little more confidently each day, and has a face full of bruises and road rash to prove it. I'm glad we got his picture taken a couple of weeks ago, before he became so adventuresome.
Speaking of pictures, I've put up some favorite NICU photos of Charlie and Jack in the photo album, in celebration of the reunion. Please take a look, and thanks for checking in!
Friday, April 25, 2003 8:23 AM CDT
We're headed to the hospital for Paul's hernia surgery this morning, so please send some prayers his way for quick healing. (I have ulterior motives in that request, since the longer Paul is down, the more I have to lug Jack around myself -- he's getting mighty close to 16 months now and still refuses to walk independently, although he taunts us by standing for 10 or 15 seconds at a time and cruising around the house using only a few pudgy fingers for support.) The surgeon is hoping to do Paul's hernia repair laparoscopically, which would allow for a much faster recovery, but we won't know for sure until he starts.
Liam's class has a much-anticipated field trip to the Minnesota Zoo today, and he had been hoping that I could come along as a volunteer, so I had to break the news to him this week that not only would I be missing the field trip, but that I would be missing it because Daddy needed an operation that day. I explained that Daddy is not sick, but just needs a little repair job, and that it's a small, safe operation, like Jack's, and not a big, dangerous one, like Charlie's. "Oh!" Liam replied, brightening up, "and Jack didn't die!" Then he thought for a moment, and asked, "Do people ever die of hernia operations?" I assured him that Daddy would be fine and would probably be home in time for supper that night. Liam's loss of innocence and sense of security continues to break our hearts. Developmentally, it's difficult for him to comprehend that Charlie's death was nobody's fault -- he still feels that the doctors must have made a terrible mistake for things to come out so wrong. All during Charlie's treatment, we had explained the plan to both Charlie and Liam in ways they could each understand, and they had absolute faith that things would go according to plan, just as we all expected Charlie's course to follow the "road map" given to us when he was first diagnosed. Liam has learned earlier than most of us that doctors are not miracle-workers (at least, not all of the time), and that out best-laid plans can be shattered before our eyes. I know that he will revisit this issue again and again as he grows up. At the same time, though, he is learning some valuable lessons in resilience. We'll all have character to spare.
It's proving to be a good thing that Paul's surgery is on Liam's field trip day -- he's so wound up about the trip (and the lunch that he gets to take along) that he has no time for anxiety about Daddy. I'm almost relieved I won't be going along on that one! In two weeks, they're going to the Minneapolis Institute of Art to look at representations of animals and insects in art, and I'll be able to volunteer for that trip -- I'm guessing that one will be a little more subdued. Thanks for checking in, and especially for signing the guestbook -- Liam was reading some past entries a few days ago, and especially loves the ones about him. He was jumping around the room, shouting, "I'm FAMOUS! Hooray! I can't believe it! I didn't know I was famous ALREADY!" Thanks for helping him feel like a celebrity -- we can live with the ego trips!
Sunday, April 20, 2003 11:55 PM CDT
Happy Easter! I hope this season will be a blessed time of renewal for all. I think Easter is more important to us this year than it has ever been before, now that we feel such a personal stake in the resurrection. If thoughts of your own mortality bother you, just try contemplating your child's. We can't afford to take Easter for granted anymore.
Charlie, it seems, took the Easter story seriously even as a three-year-old. The day after Charlie died, his Sunday school teacher, Joan, shared a story that has stayed with me through these months and has been especially important to me during this Easter season. Last Easter, two months before Charlie was diagnosed with cancer, Joan was leading the preschool class through the story of Christ's crucifixion and resurrection. Charlie always sat quietly during circle time and listened attentively to the story, she claimed (something hard for us to envision, since Charlie usually preferred to do the talking -- and talking, and talking -- but he did love a good story). This time, though, Charlie became agitated, jumped to his feet, and repeatedly interrupted Joan, asking, "Why did Jesus have to die?" and refusing to accept the explanations she offered. She tried several different theological approaches, but Charlie became more dissatisfied and upset, and insisted strenuously that he needed to know WHY Jesus had to die. It was clear that he was not going to let her finish the lesson until he received what he deemed a satisfactory answer. Finally, Joan offered simply that Jesus had to die to show us that, after we die, we will live again. With that, Charlie was suddenly satisfied, sat back down, and allowed Joan to continue with the lesson.
Joan was so struck by Charlie's uncharacteristic reaction to the Easter story that she discussed it at the time with other Christian education leaders and clergy whenever she had the opportunity to seek their insights, and they felt that Charlie's keen interest in the story might stem from the fact that he had come so close to death as a baby, when his life hung by a very fragile thread through several crises in the NICU. Little did any of us know last spring that Charlie's future held even greater dangers than his past. While we are thankful that Charlie faced his cancer surgery with great hope and courage, completely innocent of the fact that death would be the unexpected outcome, he seemed to have occasional glimpses of a larger reality, beyond our perceptions.
In the here and now, though, we had another holiday to get through without Charlie's bodily presence. The Easter Bunny remembered him by filling his basket with sunflower and mini-pumpkin seeds for Liam and Jack to sow -- the little pumpkins should be ready for harvest just in time for Charlie's birthday. We celebrated with Paul's family today and even have a BRAND NEW PICTURE of our family in the photo album. It's still strange to see family pictures without Charlie, but for now we'll have to settle for the gleam in Jack's eye.
Monday, April 14, 2003 10:30 PM CDT
"Good news, Mommy!" Liam called from the backyard when he got home from school on Friday. "Charlie sent us more dandelions!" A few days before, I had spotted our first dandelions of the season, growing in a small clump next to the house, in the same spot where they had first surfaced last April. It was Charlie's daily chore last spring to pick every last dandelion from our yard and he took the responsibility very seriously -- every spare container in our house was filled with dandelion bouquets, presented lovingly and with great pride by a beaming Charlie. So when I saw those first two dandelions braving the fickle Minnesota spring weather, I showed them to Liam and we wondered if they might be Charlie's way of saying hello -- there was one for Liam and one for Jack, followed the next day by blossoms for Paul and for me. Since then, we've picked dandelions for Heather, Alicia, Megan, Matthew, Tim, & Julie from that one tough little plant, and there are plenty more on the way. There are two buds right now for Max and Oliver, and Liam is anxiously waiting for them to open up. We wouldn't mind terribly if Charlie confined his heaven-sent dandelions to that one little plant next to the house (that truly would be a miracle), but I suppose it won't be long before our yard has enough dandelions for every visitor to this page. Liam also found some Johnny Jump-Ups in the grass, and decided that henceforth they shall be known as "Charlie-Loves." Works for me!
As Paul wrote in his update last week, six months have now passed since Charlie's death, and we miss him no less than we did that first day. I've been trying so many different ways to comprehend that length of time, measuring it against our other frames of reference -- it's twice as long as Charlie's treatment, twice as long as my bedrest with Jack, longer than my pregnancy with Charlie, longer than Charlie's stay in the NICU, and almost half as long as Jack's entire lifetime... I'm trying hard to remember that from the perspective of eternity, those six months -- and the years that stretch before us, empty of Charlie's physical presence -- are nothing more than the blink of an eye. When I was sick with that nasty strep infection last week, I was just trying to make it through each long day until Paul came home to take the boys off my hands so I could sleep. As I moped about with my piddly complaints, I thought a lot about how much more Charlie suffered in his three long months of treatment, and how endless those days must have felt to him. In the end, I feel at peace with the fact that his pain was cut short, and exchanged for joy unbounded by the sense of time and space that confines us.
Thank you for checking in -- I'm sure Charlie will be sending lots of dandelions your way!
Wednesday, April 9, 2003 11:21 PM CDT
I don't want to boot Paul's update off the page because it's a rare thing to hear his perspective on life, but now that the fog in my brain has lifted and I can put together a somewhat coherent thought, I just wanted to add this: please say a special prayer for our small friend, Addison (a.k.a. A.J.) who is celebrating his fourth birthday today. A.J. has been fighting an uphill battle against hepatoblastoma since last April and still has a long road ahead. We don't think Charlie would mind sharing the spotlight for a moment -- as a middle child, he ought to be used to it!
Monday, April 7, 2003 9:34 PM CDT
On today, the 6-month anniversary of Charlie's death, it is very appropriate that everyone here is sick to one degree or another.
Terese has a raging case of strep throat, courtesy of Liam's classmates. Liam is getting over a nasty weekend cold and Jack is still having some problems with bowel regularity - more details just aren't necessary. As for me, I'm sick of what passes for early spring in Minnesota. Bah! More snow is not what tired hearts need in April. At least the Twins can't get beat today...
Not much for real news these days. Liam continues to score perfect spelling tests and struggles to understand that three minus two is one. Oh well, I always knew he took after his mother ;) Jack is on the verge of walking; he took one tentative side step last week, but nothing since that we've noticed. He is showing a sudden renewal in the steps to the boys' room, so much so that we found him at the top of the stairs the other day after being out of our sight for just a minute. The child has no fear. Terese and I must be getting soft.
We are also planning our first trip since 1992, a combination 10th anniversary gift / honeymoon / vacation in the Canadian Rockies. We want to stay in Banff National Park for a few nights, and near Calgary for a few more. We plan on the general sightseeing stuff - mountains, hiking and going to Dinosaur Provincial Park near Drumheller. Any readers of this site have insights for us? We're pretty wide open right now, but need to get reservations made soon before everything is taken. The boys will stay with relatives, but we don't know which one(s) yet. I'm still in favor of just leaving the boys at the house and the relative who gets here first gets to keep them ;)
Well, for not much, I really rambled on, hehehe.
-Paul
ps Congratulations are in order for two of my best college friends, Scott and Glenn, both of whom are expecting baby #2. Congrats Scott and Cathy, and Glenn and Teresa! We all know that second children are the best of the bunch!
Tuesday, April 1, 2003 10:16 PM CST
After last week's long-winded update on Jack, Liam is due for some equal time. We had our first parent-teacher conference at his new school and were glad to see how well he has adjusted to the change. We can keep track of the number of weeks Liam has been at the new school by counting the perfect spelling tests on the fridge -- there are six of them now and Liam thinks we'll need to get a bigger fridge before long. He is SO proud of his work and it's wonderful to see him working hard toward his goals. His interest in his schoolwork has skyrocketed -- all he needed to excel was to be given harder work and higher expectations. To top it off, Liam's teacher just had her first baby a few weeks ago and, in a move that made Liam's ego swell just a bit more, she named her baby Liam. Our Liam is very tickled about that and is looking forward to her return at the end of April, almost as much as he's looking forward to summer vacation.
At school, Liam's class is currently studying astronomy, so we've been reading lots of books about the universe at home. Ever since we visited the Kennedy Space Center, Liam has been puzzling over heaven and its location, which is a pressing question for all of us, I think. He had initially decided that it must be out past the planets, but as he learns more about the vastness of space, his thinking is having to stretch a bit more. One book I have especially enjoyed reading to Liam is called, “Born with a Bang,” written very lyrically from the perspective of the growing universe. It goes into some pretty heady science, while retaining a sense of wonder at how amazingly improbable our universe is. After we read about the origins of the universe this week, Liam wondered what came after it. He decided that when you get to the edge of the universe, there must be a very large white box. I asked him what was past the white box, and after thinking about for awhile, he decided that that’s where heaven is. These are tricky questions. The one thing he feels sure of is that Charlie is seeing a lot of whales in heaven, and is probably riding around on a T-rex, and watching meat-eating dinosaurs fight with plant-eating ones. But there’s just one problem, he informs me -- nobody can die in heaven, so the meat-eaters could starve without plant-eaters to munch on. So God has to provide hamburgers for the meat-eating dinosaurs. Problem solved, sort of – he hasn’t figured out yet how the cows factor into all this.
Meanwhile, on the corporeal plane, Liam announced yesterday that he has made some changes in his career plans and has decided to become a barber -- last we had heard, his ambitions were to be either a photographer, cartoonist, or marine biologist. First, though, he says he'll need to make a model head to practice clipping the hair correctly -- thankfully, Jack's dearth of hair makes him ineligible for that kind of experimentation (we hope). He plans to open the first barbershop where post-haircut ice cream is served to kids, rather than the meager lollipops he gets from his barber -- actually, he plans to offer ice cream in the summer, and something "more appropriate" in winter, like chocolate malts. Liam said he would be sure to go to college first to learn how to become a barber, and wondered if they have ping-pong in college. I assured him that most good schools do. He asked many more probing questions about college, especially about the food, and wished he could skip grades 2 through 12 and go straight there. I convinced him to stick it out in elementary school a little longer and enjoy being a kid while he can, because soon enough it will be time for him to go out and get a job. He has no interest in that, so I imagine he’ll be looking into grad schools next.
Thanks for checking in – someday, maybe Paul and I will post updates on ourselves. It’s so much easier to talk about the kids, but we do try to have lives of our own.
Thursday, March 20, 2003 12:15 PM CST
It has been another busy week for Jack (and his chauffeur). On Monday, he returned to Children's for his 12-months-corrected (14 months actual age) NICU follow-up appointment. I wasn't sure how cooperative he would be -- last week, he went to "baby college" for a day to volunteer as a somewhat reluctant guinea pig for the neurodevelopmental institute at the University of Minnesota. They're researching memory and attention in ex-preemies versus full-termers, hypothesizing that preemies' extra experience in the world may bestow a slight edge when it comes to mental tasks requiring attention and memory skills. Charlie had certainly exhibited a remarkable attention span and memory, but we think that had something to do with spending much of the day being read to or doing puzzles while he was cooped up in his high chair for tube feedings. I have a hard time seeing the value of this particular research -- even if a few preemies are found to benefit in some small way from their extra time out in the world, the risks that prematurity poses to health and development are far greater, as we know too well. (I feel that I can't repeat too often or too loudly that ex-preemies, especially the tiniest ones, have been found to develop hepatoblastoma at a rate 16 to 23 times greater than full-term children.) And we have always been keenly aware that Charlie's stellar cognitive outcome was exceptional for a 24-weeker. At any rate, though, the testing gave Jack an opportunity to show us what he can do. He was tired and cranky during the initial testing, and just lobbed the tester's toys back at her until he warmed up to her a little. But he did give the researchers the data they wanted when he completed some memory tasks that his full-term peers could not do yet.
Fortunately, Jack was more cooperative at his NICU follow-up on Monday. Developmentally, he's doing pretty well -- testing placed his mental age at 12 months, although the tester felt he was probably beyond that. His motor score lags a bit at 10 months, primarily because he isn't walking yet. Because of that, they'll evaluate him again in six months rather than waiting until he's two, or sooner if he isn't taking a few steps within a month. He has been cruising and crawling for more than four months now, but doesn't seem to see the point of walking. Personally, I think there are enough laundry baskets and large toys scattered around our small house that he sees no need to walk without holding on to something! In terms of size, Jack has slipped off his growth curve a bit in both height and weight -- he weighs 20 pounds, 3 ounces, and is about 29 inches tall. He has only gained two pounds since early November, so the follow-up clinic sent us home with several handouts on ways to boost his calories. This seems so odd, after Charlie's severe feeding difficulties and our obsession with every calorie we could squeeze into him. Feeding Jack seems so blessedly simple -- we put food in front of him, and he eats it until he's full. His appetite isn't remarkably hardy, but he does like food and he seems well-proportioned to us. But it won't hurt to keep a closer eye on him and feed him some pudding or ice cream now and then. On Sunday, he had his first experience with Creamy Cone, a neighborhood institution. It was a bittersweet first as we remembered the many trips to Creamy Cone we made last summer at Charlie's request. He loved to order a cone and hold it in his hand, but never ventured a lick. He wanted so much to enjoy food (and especially to please us), but most food held no pleasure for him.
On Tuesday, we headed back to Children's again to see Jack's pediatrician. At his first oncology exam at the beginning of March, Dr. Messinger noted that some of his lymph nodes were quite enlarged and asked us to follow up with his pediatrician in a couple of weeks. As luck would have it, Jack got a nasty cold just before the peds appointment. Even with the new illness, the nodes had gone down in size, from two centimeters to one, so that was good news. Jack has bronchiolitis and has been wheezing up a storm, but he is what they term a "happy wheezer," playing and eating pretty normally while huffing and puffing like a chain smoker with a 3-pack-a-day habit. His oxygen saturation levels weren't great, topping out at 92 or 93, but nebulizer treatments had no effect so we've just been waiting it out and he sounds better today.
The next update will be devoted to Liam, but I've gone on enough for now -- what I lack in frequency, I make up for in volume! Thank you so much to all who keep checking in on our family and writing words of encouragement.
Sunday, March 9, 2003 10:25 PM CST
I need to stop promising timely journal updates, as life always seems to have other plans. Last week was busier than I expected, with lots of work to do. Liam's homework load has gotten quite a bit heavier since he started his new school, too, and this is somehow translating into more work for me. Hmmmmm...
Jack's first liver ultrasound looked just fine -- he wasn't crazy about the transducer slithering around in the goopy stuff on his tummy, but he managed to get through it. His AFP level (a protein which, when elevated, can serve as a tumor marker) was a tiny bit higher than normal, even for his corrected age, but that isn't too surprising or troubling, given that preemies start out with much higher levels than full-termers at birth, and it takes time for the levels to fall to adult levels by about one year. We expect that his next appointment in three months will show a decrease. It's reassuring to us to know that Charlie's oncologist is keeping vigilant watch over Jack -- it takes the burden of worry off our shoulders. Dr. Messinger is a very accomplished, professional worrier and will take care of that for us, so we don't have to.
It was a little strange to be back at the oncology clinic, but it was good to see the staff again. One of the nurse practitioners who took care of Charlie had saved a painting that he had done during his last appointment before the surgery -- it had been hanging up in the clinic, and we had forgotten all about it. She had tried to send it to us, but there was an error in our address, and it was returned. We're so glad to have it now -- it's a watercolor rainbow, or Charlie's best approximation of one. He had made sure to include the indigo, of course -- he was a stickler about that.
Paul is switching all of our files to the new computer (don't get me started on that one) and I don't have access to the pictures I was planning to put up on the photo page, so I put up a couple of old favorites and some of Charlie's artwork. I just needed to see his sweet little face again. Thank you for checking in!
Sunday, March 2, 2003 11:55 PM CST
Once again, time has flown by since my last brief update. Jack's recovery from surgery went pretty smoothly and he is healing well. He was more active than we expected, up and cruising the next day with the help of a lot of pain medictations, but he was pretty cranky until Thursday, when the catheter was finally removed. Jack's mood has improved considerably since then -- we're still waiting for a good night's sleep, but there's nothing new about that. He's cutting molars now, and that seems to require a lot of nocturnal wailing and parental trips up the stairs to settle him back into bed, but at least it's his own bed, and not ours -- that's progress.
Tomorrow morning, Jack will have his first liver ultrasound, as part of the screening process for Charlie's cancer, and he has an appointment at the oncology clinic after the ultrasound -- I hate to use "Jack" and "oncology clinic" in the same sentence, but we expect that the tests will be reassuring. I'm hoping the results of his first alpha-fetoprotein (AFP) test will be available -- we expect that his levels (which are normally high before age 1) will have fallen to normal levels for his age by now, and we'll try not to panic if they're slightly elevated.
Liam is thoroughly enjoying life at his new school and seems to be thriving on the more challenging curriculum. He has lots of projects going at home, too, but is never too busy to play with Jack. A pivotal moment came yesterday, when Liam stuffed Charlie's dinosaur tail (actually a draft-stopper made by Paul's grandmother) down the back of Jack's pants and transmogrified him into a Jackosaurus. It's the highest honor that Liam could bestow, really. After Charlie's death, I feared that Liam and Jack would be too far apart in age to enjoy each other's company the way that Liam and Charlie had, but they just adore each other, and I think Charlie will continue to be a bridge between them. I could just imagine an invisible Charliesaurus giddily cavorting around the living room with the fierce Liamosaurus and more docile Jackosaurus.
I vow to post a more timely update after Jack's appointment tomorrow, and it's about time I changed the photos in the album, too, but right now I need to get in a few minutes of sleep before Jack starts his ritual wakings!
Friday, February 21, 2003 8:24 PM CST
I wanted to tack on a very quick note to tell everyone that Jack is home from surgery and doing well. It would be a bit of a stretch to say that he's resting comfortably, but he's hanging in there -- as long as he doesn't move, he's just fine! I think it will be a long weekend. He has been completely zonked all day, so we're hoping that continues on into a peaceful night. Liam is relieved, as are we all. I'm sure Charlie was keeping careful watch over Jack -- I'm just glad he wasn't looking for a playmate to join him! I'll update more later, but wanted to let everyone know that Jack is all fixed up and home where he belongs.
Thursday, February 20, 2003 8:40 PM CST
Jack's surgery is tomorrow morning, and we're trying to mentally prepare ourselves to hand him over to the surgeon -- I think they'll have to pry him away from us. Relatively speaking, it's not a huge deal -- day surgery to repair Jack's hypospadias, a urinary tract defect that he was born with. It is a delicate and tedious operation, reconstructing a portion of his tiny urethra, fashioning a new opening, and putting everything back together in a presentable little package (no pun intended). It's expected to take at least two hours, and I think that time will trudge by very slowly for us. I expect some flashbacks to some tough times, and I dread the perfunctory chat with the anesthesiologist about risks, family history, bleeding tendencies, etc. Rationally, we know this is a completely different situation, but emotionally...that's a different story. It's hard not to feel a bit doomed, especially since the risk of death from Charlie's surgery was only about 3 percent. But this is a much more routine, much less invasive procedure, and we know Jack will be just fine. We'll just be relieved when it's all over. Jack will probably be less pleased about the whole thing -- recovery is likely to be pretty painful, with a catheter in place for about a week, and I'm sure he'll have strong opinions about that. But he'll thank us someday, and we'll hope to get a little payback for our trouble in the form of some grandchildren, which this ordeal may make possible.
The thought of Jack as a grandfather reminds me of something Liam asked me a few days ago. "Do you think Jack will grow up to be a grandpa?" he asked me when we were all sitting together on our bed early in the morning. It has been hard to know what to tell him about the surgery -- from his perspective, little brothers go in for operations and never come back. If all goes according to plan, Jack should be home tomorrow, possibly by the time Liam gets home from school, so it has been tempting to keep him in the dark, but he's a savvy kid, and we just can't do that. So we're telling him about a special "procedure" and "repair job" that Jack's having tomorrow, and hoping that he won't worry too much.
We'll try to update the page after Jack's surgery tomorrow -- I know he would appreciate some prayers for quick healing and as little pain as possible. Thanks for keeping tabs on our continuing saga!
Thursday, February 20, 2003 8:40 PM CST
Jack's surgery is tomorrow morning, and we're trying to mentally prepare ourselves to hand him over to the surgeon -- I think they'll have to pry him away from us. Relatively speaking, it's not a huge deal -- day surgery to repair Jack's hypospadias, a urinary tract defect that he was born with. It is a delicate and tedious operation, reconstructing a portion of his tiny urethra, fashioning a new opening, and putting everything back together in a presentable little package (no pun intended). It's expected to take at least two hours, and I think that time will trudge by very slowly for us. I expect some flashbacks to some tough times, and I dread the perfunctory chat with the anesthesiologist about risks, family history, bleeding tendencies, etc. Rationally, we know this is a completely different situation, but emotionally...that's a different story. It's hard not to feel a bit doomed, especially since the risk of death from Charlie's surgery was only about 3 percent. But this is a much more routine, much less invasive procedure, and we know Jack will be just fine. We'll just be relieved when it's all over. Jack will probably be less pleased about the whole thing -- recovery is likely to be pretty painful, with a catheter in place for about a week, and I'm sure he'll have strong opinions about that. But he'll thank us someday, and we'll hope to get a little payback for our trouble in the form of some grandchildren, which this ordeal may make possible.
The thought of Jack as a grandfather reminds me of something Liam asked me a few days ago. "Do you think Jack will grow up to be a grandpa?" he asked me when we were all sitting together on our bed early in the morning. It has been hard to know what to tell him about the surgery -- from his perspective, little brothers go in for operations and never come back. If all goes according to plan, Jack should be home tomorrow, possibly by the time Liam gets home from school, so it has been tempting to keep him in the dark, but he's a savvy kid, and we just can't do that. So we're telling him about a special "procedure" and "repair job" that Jack's having tomorrow, and hoping that he won't worry too much.
We'll try to update the page after Jack's surgery tomorrow -- I know he would appreciate some prayers for quick healing and as little pain as possible. Thanks for keeping tabs on our continuing saga!
Tuesday, February 18, 2003 11:04 PM CST
Just a very quick update (yeah, right!) to report on Liam's first day at his new school. When I picked him up this afternoon, Liam declared it "the best day ever!" so I think we're off to an auspicious start. He was actually eager to tackle his new spelling words when he got home, and is determined to master the bonus word, crustacean (I almost had to look up that one myself). As he was getting ready for bed, he told Paul that he thought tomorrow would be even better. The kids in his class have given him a very warm welcome and have been treating him like a little celebrity. It's such a joy to see him excited about something new -- this change seems to be exactly what he needed. On the down side, though, it isn't all paradise. He felt the broccoli at lunch looked a little suspicious. I guess you can't win 'em all.
I did it -- a brief update! I'll remedy that tomorrow, I hope -- Jack's surgery is coming up on Friday, and tomorrow is his pre-op physical, as well as our first step in screening him for Charlie's cancer, and I'll need to go on at great length about all that, I'm sure. Thank you all for continuing to check in on us!
Tueday, February 11, 2003 10:23 PM CST
I'm falling behind in my updates again -- we still have SeaWorld and Disney World to talk about, but I've been sidetracked with work and other things. Poor Liam got sick at school this morning with a very nasty stomach bug -- fortunately, Jack and I were at his school for ECFE, so it didn't take long to whisk him away. For a kid who has been hurling all day and running a 103 degree temp., he has been surprisingly cheerful.
In other Liam news, he's very excited about a change that's just around the corner (no, not the baby sister he's been longing for -- that would take a considerable miracle!) Next week, he is transferring to Capitol Hill, the district's gifted and talented school. We feel lucky to live in a school district where all kindergartners are evaluated for giftedness -- Liam became eligible to attend Capitol Hill last year, but he loved his current school and, with Charlie following closely on his heels, ready to take advantage of his magnet school's sibling preference, it felt right to leave things as they were. But the picture is very different now, of course, and it's clear that Liam needs a more challenging curriculum and structured environment. When a rare opening came up, we decided to make the change this year, rather than take our chances in the tough placement lottery for next year.
After visiting the new school, I think he'll love it there. Yesterday, he brought home some math homework that he apparently felt was beneath him, and commented that he couldn't wait to go to his new class, where things will be harder. "I like to do hard things," he announced, "because they're so interesting." That was certainly music to my ears. His first day will be Tuesday, February 18th, so please be thinking of Liam as he starts off on this new adventure. We were hesitant to make such a big change after all that he has faced this year, but feel reassured by his enthusiastic response. He's especially excited about having summers off, as his new school follows a traditional calendar, unlike his current year-round school. The short, frequent breaks are nice, but there's something about having a long, lazy summer stretching before a kid that's irreplaceable. He'll have more time now for visits to Grandma & Grandpa's cabin and Oma & Opa's farm, and perhaps some of the many arts programs available here.
New pictures of our Florida trip are coming soon -- I'll try to find time before the weekend to put them up, and finish telling about the rest of the trip. Thank you for checking in with us!
Sunday, February 2, 2003 11:27 PM CST
We're back! Liam and I had a wonderful time in Florida, despite their record low temps. Liam found it amusing that some of the schools in Cocoa Beach had cancelled classes due to the "cold." The high was a chilly 47 degrees when we arrived on Friday, but that didn't stop a handful of diehard surfers from hitting the waves in their wetsuits, or Liam from taking a quick dip in the outdoor pool -- luckily, the heated water was much warmer than the air, and Grandma and I stood by with toasty towels fresh from the dryer. Liam was very excited to see the ocean for the first time and spent a lot of time searching for shells and enticing hungry seagulls to come to his bread-tossing "parties."
We spent Saturday at the Kennedy Space Center, an awe-inspiring experience made even more poignant by yesterday's tragic loss of Columbia and its crew. It's amazing to think of the courage and faith it takes for people to allow themselves to be shot up into the hostile environment of space in such vulnerable-looking containers. As we left the space center, I glanced up at the Columbia flag, flying just below the American flag, signifying that a mission was in progress. I marveled at the fact that there were people up there right then, and how easy it is to take that for granted. From Cocoa Beach, my parents had watched the spectacular shuttle launch on the 16th and my dad had been disappointed that they had to leave a day early and would miss the twin sonic booms that always herald the shuttle's return. I can't imagine how awful the silence must have felt to all those anxiously waiting to hear those telltale sounds of homecoming. It's very sad to think that seven more names must be added to the astronaut's memorial at the space center.
I still have our SeaWorld and Disney World visits to cover, but I need to get to bed so that I can at least get a few minutes of sleep before Jack starts wailing. Last night, we booted him upstairs (and out of our bed, where he had become a habitual and progressively more rambunctious visitor), and it actually went pretty well. Liam is very happy to have a roommate again -- he and Charlie shared a room for nearly three years, so it has been pretty lonely up there for Liam. Now, if we could just get him to cover Jack's nighttime wakings, Paul and I could get a decent night's sleep, and we would all happier, especially since Liam insists that he never sleeps. It's actually a good thing that Jack woke up at 3 a.m. last night, or I would never have found out that Liam was out in the living room, watching a movie, oblivious to the fact that it was still the middle of the night. He paid the price today, though -- he woke up sick and spent all day lying on the couch with a fever and a rotten headache, poor guy.
I'll post an update about the rest of our trip this week, and I'll try to get some photos developed and scanned, too -- I'm hoping this will be the last time I have to do that, with the new digital camera to play with. Thanks for continuing to check in and let us know you're thinking of our family -- it means the world to us!
Tuesday, January 28, 2003 at 08:49 AM (CST)
Just a quick posting by Dad here -
Thank you everyone for your continued support, encouragement and very kind words. We read the message board every day for the strength y'all give us.
My reason for posting is that while Terese and Liam are having an absolute blast in Florida, I've been having a wonderful time with Jack. I think we've watched just about every movie in the house. Also, the new digital camera arrived and I have succeeded in uploading a new picture (Sauce Boy), so check it out!
I have also been secretly painting a test cabinent in the basement whilst the boss is away ;) We'll see if I stay in the garage for awhile after she comes back, hehehe. The colors are a bit wild, but Hey, it's the basement.
-Paul
Friday, January 24, 2003 at 1:03 AM (CST)
Well, Jack clearly did not cooperate with my plans to update the journal last week. Actually, I can't blame it on him -- I had a lot of work to catch up on, and then got busy packing for a rather impulsive mother-son trip to Florida! Liam and I are leaving early tomorrow morning (looking at the time, I guess that would be later THIS morning -- oops) to spend a few days with my parents at their condo on Cocoa Beach. I'm afraid we'll be taking the cold weather with us, but it will at least be 50 or 60 degrees warmer than here! On our agenda is Sea World, the Kennedy Space Center, the local Cocoa Beach zoo, some walks on the beach and some dips in the pool, and, of course Disney World! It will be a busy five days, and we'll have lots to tell about when we return. And now I had better go sleep for a few hours before it's time to head for the airport. I will eventually get a belated birthday update posted for Jack, too -- I'm just hoping he'll recognize me when we get home. I finally got an adoring Mama's boy, but a few days with Daddy will probably be all he needs to switch allegiances. Thanks for checking in -- I'll try to post a full report on our travels shortly after we return on Tuesday night!
Monday, January 13, 2003 at 08:19 AM (CST)
Happy birthday, Jack! I'm in the process of updating the journal, but wanted to say that much, and put up some NEW PICTURES featuring the birthday boy. Check back later today to see if Jack has cooperated with my plans to write a new update!
Monday, January 06, 2003 at 11:57 PM (CST)
The tree has been stripped and banished to the backyard for several days now -- I had a feeling it wouldn't make it through all 12 days of Christmas the day we brought it home, when we heard torrents of needles falling like raindrops over the next few days. The last Christmas celebration is over, and I feel more than ready to move on to the austerity measures of January. I usually dread the winter doldrums, but I'm looking forward to the lull this year, and hope to have some time to think and to write --the first project is to write many long-overdue thank-you notes for all the kindnesses we have received over the past few months!
I wanted to mention how thankful we are for some things that our families did to help us remember and celebrate Charlie's life during these difficult holidays. When we celebrated with Paul's family yesterday, we were so pleased that his sisters, Heather and Alicia, had found rainbow-striped Christmas tree ornaments for every member of the family -- we'll look forward to hanging those on the tree every year. At my folks' on Christmas Eve, everyone from Grandpa down to baby Oliver donned various fancy socks with all manner of rainbow stripes and jingle bells, in Charlie's honor -- even my teen-age nephews put them on without rolling their eyes (much). We have photos of our festive feet to put up on the site, but I forgot to ask my dad to e-mail them to me before he and my mom took off for warmer climes. They're sitting out part of the winter again in Cocoa Beach, Florida, but so far they aren't missing out on much winter misery. We're still waiting for some real snow, but hope it will hold off a little longer until we can replace Paul's car, which gave up the ghost on New Year's Eve. Paul was just able to coast off the interstate and into the parking lot of the Big Ten Bar. At least he got to spend part of New Year's Eve in a bar, waiting for the tow truck, which was slightly more glamorous than the evening of Trivial Pursuit that awaited him at home.
Wednesday, January 01, 2003 at 08:27 PM (CST)
I’m somewhat relieved that the holidays are almost over – illness has postponed our last Christmas celebration with Paul’s side of the family until this Saturday, and as glad as we are to observe the holiday traditions with our families and friends, much of the hoopla has rung hollow this year. Paul and I did find a great deal of comfort on Christmas eve in our customary outing to midnight mass at St. John’s Abbey, near my parents’ home. It is a beautiful service, full of hope and joy, and a true celebration of the promise of Christmas, that earth is now and forever joined to heaven through the birth of the Christ child. The mass helped us feel connected to Charlie in that eternal moment, and helped lift me out of the sense of futility that I have felt as I have gone about my holiday chores.
In the usual retrospectives that are ubiquitous in the media at this time of year, I kept expecting to hear Charlie’s name among the litanies of mourned celebrities and newsmakers. It seems impossible that he should have escaped the world’s notice -- such a small life, yet such a great loss. We bade farewell to 2002 last night with good riddance, although Jack’s birth did provide one highlight. I will grant, also, that getting through 2002 required us to live more fully, for better or worse, than most years have, and that is worth something. As must happen in a life and death struggle, things were boiled down to their essence. Still, to whom it may concern, we would like to requisition a quiet year – no more personal growth for us, thank you! We've had enough for now. As I read headlines about a gathering sense of doom at the prospect of war, I feel quite untouched by it all. I don’t know what to expect of 2003, but hope that it will be a year of reflection for me, and a year of peace for all.
Friday, December 20, 2002 at 01:57 PM (CST)
Well, I've been working on a long, rather dreary update about our meeting with Charlie's oncologist and the autopsy report, but I'm going to shelve that until after the holidays, in an attempt to be festive, and to share some sweet things that Liam has said recently, as well as some NEW PICTURES of Charlie from last Christmas.
All of the holiday preparations feel so strange – it’s surreal to watch people hustle around as if their lives depended on creating the “perfect” Christmas. I was standing in the baking aisle at Cub on Sunday evening, contemplating chocolate chips, when the woman standing next to me let out a shriek. "Oh, my God!" she lamented. "Don't tell me they're out of cardamom! I can't BELIEVE this is happening to me!" I wanted to take her by the shoulders and shake her, and tell her a little bit about what it’s like to face a true nightmare. Christmas shopping seems equally pointless and absurd. (However, that hasn't stopped me from doing a little damage to the credit card balance, doing my part to keep stimulating the economy.) So often I reach out to pick up a book or toy, thinking, “Charlie would love this,” and then have to put it back on the shelf. We have been able to channel some of those longings to give gifts to Charlie into other projects, giving a few things to other children who need them. It will give us some pleasure to think of those children playing in Charlie’s honor. And I feel sure that, in Charlie’s personal corner of heaven, the streets are paved with Legos, with no grown-ups grumbling about stepping on them in their stocking feet. I have to believe that he is reaping gifts of joy and peace that we could never dream of giving him.
A few weeks ago, Liam asked me, “Does Santa Claus know that Charlie died, or do we need to write him a letter and tell him?” A heartbreaking question -- I told him that I’m sure Santa knows, and feels very sad about it. I have wondered what to do about Charlie’s stocking on Christmas morning, not wanting to leave it empty, but knowing that Santa can’t fill it with gifts for Charlie. I feel that we need to very careful about how we talk about Santa (and the Easter Bunny, and the Tooth Fairy) from now on, wanting Liam to enjoy what will probably be his last year of total credulity, but being mindful that, once he starts to question the myths of his early childhood, the door will be flung open to other questions, too. He needs to be able to trust that, when it comes to matters of faith, we have not betrayed him with childish fantasies of heaven. We may talk about it playfully, but we believe with all our hearts that we are called into a fuller life with God, beyond this one and beyond human understanding. Liam is trying hard to grasp it – as I was tucking him into bed the other night, he said, “I think that when children go to heaven, they look around for a place to live, and find parents to take care of them.” We talked about all of the great-grandparents who have gone before Charlie and our hope that they are taking care of him – in fact, they’re probably quarreling over who gets to have him next!
Anyhow, we haven’t spoken with the Big Guy directly, but we believe his plan is to fill Charlie’s stocking with coins, which Liam can give to the charity of his choice. We hope this will become a new family tradition as Jack and Liam grow up, and it makes me feel better to have at least this one thing settled about how we’ll remember Charlie at Christmas. I think it will be challenging, as time goes on, to keep Charlie’s place in the family without becoming too mired in the past. It’s so hard to think of years stretching before us, without Charlie. It just doesn’t seem possible that our family must continue without him, but I feel that the best way to keep Charlie’s memory alive and present for us is to remain strong as a family.
Christmas this year was to mark the completion of Charlie’s cancer treatment – he would have finished his last round of post-surgery chemo just before the holidays, and I had been saving dozens of his hospital admission bracelets to make a paper chain to circle our Christmas tree, as a celebration of his victory over cancer. We were looking forward to this Christmas for so many reasons, eager to return to our normal holiday traditions after my bedrest derailed all plans last year. In hindsight, that may have been a great gift. Because we weren’t able to travel, the boys were able to participate in our church’s Christmas eve pageant for the first time (see adorable pictures in the photo album!). Instead of out running holiday errands every evening, I was right where the boys could find me, parked on the couch. I had nothing to give the boys last year but time, and I spent lots of hours reading to Charlie and talking with him about his many wild ideas (okay, they got lots of presents, too – online shopping is one thing I can do very well horizontally). It is a blessing that we had that time, before Jack’s birth pulled me into the NICU for a month, and then the craziness of adjusting to a new baby at home, and then the birth of our nephew Oliver, another new preemie in the family, and our stressful attempts to partially wean Charlie away from his feeding tube…and then the cancer diagnosis and all its accompanying miseries. I’m grateful for those peaceful hours together last Christmas, and I’m trying to be mindful of that as we head into the final frenzied days before the holidays this year. We send out our hopes to all of you for a blessed holiday season, and our thanks for your continued support of our family.
Sunday, December 08, 2002 at 10:25 PM (CST)
Did you see it?
Tonight, at 7 p.m., we lit a candle for Charlie, as part of the Compassionate Friends Worldwide Candlelighting, celebrated each year on the second Sunday of December. Starting in New Zealand, a wave of light has again been sent around the globe as parents in every time zone have lit their candles at 7 p.m., that their children's lights may always shine. Charlie's candle is still going strong on the fort where he and Liam played for many happy hours and where we had one memorable picnic, replete with Charlie's smorgasbord of odd foods.
Next to Charlie's candle tonight is a candle we lit for baby David, son of Chris and Mark, who was born and died on November 27th of a congenital heart defect. Please keep his family in your thoughts and prayers, especially as they hope to bring David's twin, Jack, home from the NICU in plenty of time for Christmas.
Thursday, December 05, 2002 at 09:27 AM (CST)
Well, we're back! Liam, Jack, and I enjoyed a long visit at my parents' (and Paul enjoyed two short ones -- and got some much-needed home improvement projects done while we were gone). It was nice to have plenty of time to do our traditional shopping, baking, candy-making, Thanksgiving preparation, and, of course, lots of eating! Having the Thanksgiving feast without Charlie was hard, but I envisioned him joining us, stuffed to the gills with heavenly mashed potatoes -- although ours ran a close second, I have to boast. We tried some new recipes this year, and it was good to do a few things a little differently.
We returned home late Friday so that we could get up early Saturday and start scrambling to prepare for Jack's long overdue baptism, which was on Sunday. I was pleased to be able to squeeze him into our baptismal gown with no trouble at all -- he looked a little silly crawling and cruising around in a three-foot-long dress, but I wasn't about to pass up my only legitimate opportunity to dress him in something frilly. Photos will be forthcoming, as soon as they're developed and scanned (which reminds me that I still have a few of Charlie's last pictures to scan and post). While I should have been scrubbing the bathroom in preparation for our guests, I was tinkering around in the basement, tie-dying baby socks because I felt it was very important that Jack should wear rainbow socks under his baptismal gown, in honor of Charlie, and so he did.
In other Jack news, he was seen by the pediatric urologist yesterday to prepare for surgery in January or February (Jack was born with a urinary tract defect called hypospadias, which must be surgically repaired). I was glad to have it confirmed that his case is mild and should be fully correctible. I was especially relieved to hear that the surgery can be done outpatient, at the day surgery center across the street from Children's. I had been feeling some dread at the thought of returning to the same operating room and the surgical waiting room where we rode out all of Charlie's surgeries, including his fateful one. I'm sure Paul and I will still be nervous wrecks when the time comes, even though this is a completely different situation with very low risk of serious complications. It won't be much fun for Jack, either -- it will be painful, and he'll have a catheter in place for about a week during recovery, but he'll thank us someday, when he realizes how important it is that those crucial parts have full function (then again, maybe we can put this off until he reaches 21!)
On a more serious note, Paul and I will be meeting with Charlie's oncologist this afternoon to review the autopsy report and some other information about Charlie's treatment and NICU records. We don't expect to hear anything earth-shattering, but it will be good to go over everything again in a calmer state of mind and have some of our lingering questions answered, if possible. I'm sure it won't be an easy conversation, but we very much appreciate that Dr. Messinger wants to share all the available information with us and grapple with this together. Perhaps we'll gain a little more insight about what happened in surgery, and why.
Tuesday, November 26, 2002 at 08:15 PM (CST)
OK, just to prove that my time home alone hasn't entirely been spent swilling beer and watching TV, I have updated the pictures to some of my personal favorites of Charlie and his brothers.
Have a happy and safe Thanksgiving everyone!
-Paul
Monday, November 25, 2002 at 09:29 AM (CST)
Liam, Jack, and I have been at my mom and dad's for a little pre-Thanksgiving R & R -- or as much of that as can be had with a spoiled baby who still gets up at least twice a night for feedings. (I don't know who's more dependent on those middle-of-the-night feedings, Jack or me -- he's so nice to cuddle!) Jack passed his nasty cold off to me a couple of weeks ago and I suddenly understood why he had been so crabby -- a solid week passed before I could crawl out from under the crushing headache. After the haze in my head lifted a bit, we were scurrying around getting ready for the trip to Grandma and Grandpa's, and doing a few fun things, too. We decided to join the Y, and I've been taking Liam and Jack there to swim as much as possible. Liam is on a long vacation from school (he goes to a year-round, and has three-week breaks about every two months), so it has been a perfect time to check out the new Y, complete with a huge waterslide and a great area for Jack to splash around in. Liam took his lifelong buddy Calvin swimming last week and it was great fun watching the two of them negotiating at the top of the slide to determine who would brave the watery slopes first. About three dozen little girls breezed past them and zipped down the slide while the boys postured and boasted up there -- finally, Liam's head popped into view at the bottom of the slide, and Calvin came close behind him. They were so thrilled with their accomplishment -- they both beamed as if they had won Olympic gold medals.
Jack has been accomplishing big things, too -- he has been crawling and cruising vigorously for a few weeks now and is thrilled at his new mobility. He continues to be the sweetest baby ever, most of the time, and it is just a joy to snuggle with him. I cannot imagine how much more painful our loss of Charlie would feel, without Jack's warm little body and always-ready laugh to comfort us. Holding Jack, I feel a bit closer to heaven, and Charlie's spirit glows a little brighter in my heart. Yesterday, we celebrated two great milestones with our nephews, Oliver and Max. Oliver, who was born at 27 weeks and braved the NICU with great success, was baptized yesterday, and Max celebrated his fourth birthday. Charlie was very fond of them both and we're sure he was looking on with pride -- and a little envy, at Max's birthday loot. We trust, though, that heaven is well-stocked with Legos.
So, my excuses for not getting those new pictures up are as follows: too sick, too busy, and now, too far away. I did get some pictures scanned, but forgot to e-mail them to my Yahoo account before I left for my folks'. That's probably for the best -- the file size would bring Grandpa's touchy computer to its knees, and his dial-up connection is mind-numbingly slow, especially since I'm spoiled by our DSL line at home. We'll be returning home after Thanksgiving, and I should be able to put them up after next weekend. Thanks so much for continuing to check in -- I hadn't been able to check Charlie's page for a few days, and just saw this morning that the page has now had more than 20,000 visitors. It is so heartening to see how many times people have thought of our precious son over the past months, and have taken time to look in on us.
Monday, November 25, 2002 at 09:29 AM (CST)
Liam, Jack, and I have been at my mom and dad's for a little pre-Thanksgiving R & R -- or as much of that as can be had with a spoiled baby who still gets up at least twice a night for feedings. (I don't know who's more dependent on those middle-of-the-night feedings, Jack or me -- he's so nice to cuddle!) Jack passed his nasty cold off to me a couple of weeks ago and I suddenly understood why he had been so crabby -- a solid week passed before I could crawl out from under the crushing headache. After the haze in my head lifted a bit, we were scurrying around getting ready for the trip to Grandma and Grandpa's, and doing a few fun things, too. We decided to join the Y, and I've been taking Liam and Jack there to swim as much as possible. Liam is on a long vacation from school (he goes to a year-round, and has three-week breaks about every two months), so it has been a perfect time to check out the new Y, complete with a huge waterslide and a great area for Jack to splash around in. Liam took his lifelong buddy Calvin swimming last week and it was great fun watching the two of them negotiating at the top of the slide to determine who would brave the watery slopes first. About three dozen little girls breezed past them and zipped down the slide while the boys postured and boasted up there -- finally, Liam's head popped into view at the bottom of the slide, and Calvin came close behind him. They were so thrilled with their accomplishment -- they both beamed as if they had won Olympic gold medals.
Jack has been accomplishing big things, too -- he has been crawling and cruising vigorously for a few weeks now and is thrilled at his new mobility. He continues to be the sweetest baby ever, most of the time, and it is just a joy to snuggle with him. I cannot imagine how much more painful our loss of Charlie would feel, without Jack's warm little body and always-ready laugh to comfort us. Holding Jack, I feel a bit closer to heaven, and Charlie's spirit glows a little brighter in my heart. Yesterday, we celebrated two great milestones with our nephews, Oliver and Max. Oliver, who was born at 27 weeks and braved the NICU with great success, was baptized yesterday, and Max celebrated his fourth birthday. Charlie was very fond of them both and we're sure he was looking on with pride -- and a little envy, at Max's birthday loot. We trust, though, that heaven is well-stocked with Legos.
So, my excuses for not getting those new pictures up are as follows: too sick, too busy, and now, too far away. I did get some pictures scanned, but forgot to e-mail them to my Yahoo account before I left for my folks'. That's probably for the best -- the file size would bring Grandpa's touchy computer to its knees, and his dial-up connection is mind-numbingly slow, especially since I'm spoiled by our DSL line at home. We'll be returning home after Thanksgiving, and I should be able to put them up after next weekend. Thanks so much for continuing to check in -- I hadn't been able to check Charlie's page for a few days, and just saw this morning that the page has now had more than 20,000 visitors. It is so heartening to see how many times people have thought of our precious son over the past months, and have taken time to look in on us.
Sunday, November 10, 2002 at 11:45 PM (CST)
Sorry, no new pictures yet – Jack has been sick all week with a rotten cold & stomach bug (I'll spare you the gory details, but suffice it to say I'm getting well acquainted with our new washing machine), and he has insisted on being held pretty much around the clock. I can’t say I mind that much – he’s growing up too fast, so it’s nice to have an excuse to get in some extra cuddles. Jack is starting to feel better, so I hope to catch up on some of the things that need to get done around here and spend some time on Charlie’s web page.
Thanks for continuing to check in so faithfully! I’ll try harder to hold up my end of the bargain, but for now, I'm going to bed. Or maybe not -- I hear Jack's protests drifting over from our bedroom, and it sounds like a good night's sleep is not on his agenda. So it goes.
Monday, November 04, 2002 at 10:17 PM (CST)
It's so hard to believe that four weeks have passed since Charlie's death. We still half-expect him to breeze through the door with his Sesame Street backpack strapped on and announce, "I'm home!" just as he did when he bounced off the school bus after ECSE preschool last year.
So many have asked us how Liam is doing. He seems to be coping fairly well, in his own way. He doesn't want to talk about Charlie much, but once in awhile he draws a picture of Charlie visiting the zoo or doing something else he loved. Last night, Paul's sisters brought us a beautiful cedar chest to keep Charlie's things in, a special gift from Heather, Alicia, Tim, and Julie. We were explaining to Liam what the chest was for, and asked him to think of things to put inside it to help us remember Charlie. "Water!" he shouted. We gently suggested that water wouldn't be the best thing to put inside. "I'll draw a picture of water, then!" he decided. That will be perfect.
As with all of us, Liam's emotions are close to the surface and erupt at unexpected times. Last week, I went to his classroom to help the kids get ready for their harvest party. Liam was busy with his work and didn't see me arrive -- I didn't want to interrupt him, so I started helping some kids prepare food in the hallway. I looked up a few minutes later to see Liam in tears -- he thought I hadn't come and was very distraught. His teacher called last week to let us know that a social worker at school is starting a "friendship circle" designed to help a few kids with social skills -- one of Liam's closer friends at school was identified as a child who might benefit from the group, and the teacher wondered if we might let Liam join as well, ostensibly to help Julian, but also to give Liam an opportunity to talk about his feelings. We think that's an excellent idea, and the group will be starting up soon. Liam has endured so much these past few months (the past four years, really), without complaint. He is due for some serious quality time, and seems to be thriving on the extra attention we've been able to give him in the past few weeks. He has funneled all of his big brother energy into taking care of Jack, who is also thriving on the extra attention.
We recently developed some new photos of Charlie -- it's hard to accept that they will be the last ones. I'll be scanning them soon and plan to put them up on the page sometime this week. Thanks for checking in!
Wednesday, October 30, 2002 at 11:12 PM (CST)
When daylight savings time ended and we turned the clocks back on Sunday, I couldn’t help but think back to April, when we turned our clocks forward and lost an hour. I want THAT hour back. I wish we could just pluck it out of time now – an hour that knew no cancer, no chemo, and no sadness. What a wonderful thing it would be if we could have just an hour a year to savor with those we have lost. But, of course, that wouldn’t feel like enough, either.
Paul and Liam have been busy carving pumpkins and getting ready for Halloween festivities, and I’m bracing for the first of a series of holidays that will be tinged with so much sadness. Charlie was looking forward to Halloween with such excitement this year. Liam has been planning his knight costume for a long time, and Charlie had initially announced that he would dress up as Liam’s squire and do squire-ly things, like hold Liam’s sword and be at this beck and call (there was nothing new about that!). Jack was tapped to serve as the requisite dragon. Charlie stuck with that plan for most of the summer, until he realized that he wasn’t too sure what a squire costume should look like. We showed him a few examples from “Monty Python and the Holy Grail,” but he wasn’t impressed. He decided to go with his triceratops costume from last year, a tried-and-true get-up which has seen three or four Halloweens now, between Liam and Charlie. I think Charlie would have gotten a huge kick out of trick-or-treating this year – the highlight of his clinic visits and hospital stays had been the non-negotiable trip to the hospital “gift-a” shop, where he relished picking out a new treat to try. Given his tremendous difficulties with feeding, we were only too happy to indulge him as he experimented – he usually just took a few tentative licks, but that was progress. I would have loved to see the look on his face this year when the time came for the boys to inspect their Halloween loot.
What a cruel month October has been this year – we are so saddened at the loss of Paul Wellstone and all of the precious lives lost in the plane crash. I never took a class from Prof. Wellstone in my time at Carleton, but he was hard to miss on campus – he was always talking, with great passion, about something of dire importance and urgency to him. It has been striking to me that, in terms of energy and sheer force of personality, he and Charlie had a lot in common – they were both “smaller guys” who would never walk away from a fight and had charisma to spare. (For those who don’t know Charlie’s “smaller guy” story: when Charlie was two years old, we were grocery shopping and a kindly old lady stopped me and remarked on what a cute baby Charlie was. Charlie shot her a rather withering look and declared, “I’m not a baby – I’m just a smaller guy.” ) It has been strange that our private mourning has suddenly been joined by a public grief. There has been something oddly comforting about that, perhaps in the way that average people have sought meaning in the tragedy and vowed to carry on the Wellstones’ legacy of service, whatever their political persuasions. That’s inspiring – we hope we’ll be able to do the same for our smaller guy.
Thursday, October 24, 2002 at 09:47 PM (CDT)
I've had some requests to describe the tribute fund we've set up in Charlie's name to benefit the Child Life Fund at the Children's Hospitals and Clinics Foundation, 2910 Centre Pointe Drive, Roseville, MN 55113 (website: www.childrenshc.com). Many have asked us what child life is all about. Child life specialists use medical play, discussion, and special materials to support the emotional and developmental needs of patients and their siblings. They help children make sense of their experiences in the hospital and prepare them for what's ahead so that children can have some feeling of control during a time when so much is beyond their control. That was so important to Charlie’s sense of well-being, especially while he was being treated for cancer and had to adjust to so many new procedures and tests in a short time, on top of feeling really lousy.
Our indebtedness to the child life specialists actually began much sooner, though, with Liam’s first visit to the NICU to visit his tiny brother. In addition to stocking the waiting room with fabulous dinosaurs, they provided Liam with lots of medical supplies to play with, countless stickers, and a calendar to help him count the days until Charlie came home. When Jack was born three years later, both Charlie and Liam were able to participate in a sibling group while he was in the NICU – Charlie was very proud of the lovely tongue-depressor picture frame he made one evening, and I distinctly remember him talking about the fun he had in that group, just a few days before his fateful surgery. We also had help from child life in preparing him for that surgery and it’s comforting to us that he went into the operating room without fear.
Our house is full of Polaroid pictures, special trinkets earned after particularly rough clinic visits, dolls sporting Mic-Key buttons in their tummies and dolls with Port-a-Caths for IV medications and blood draws, just like Charlie’s “accessories,” books, and lots and lots of stickers, courtesy of child life. These are such small things, but they add up to great comfort for a child who is trying to make sense out of the very grown-up things he’s suddenly confronted with.
There are so many worthy causes to support, just at Children’s. We benefited greatly from the Cancer Kids Fund, which provides parking passes and meal vouchers to families during hospital stays, and Charlie was involved with so many sub-specialties at Children’s that it was hard to choose just one to single out. In the end, though, we chose the child life department because they were so helpful to our whole family throughout Charlie's life – their caring influence spanned all of Charlie's "career" at Children's, and we're glad to honor Charlie's memory by supporting their work with other children. We are so pleased and grateful that we have received more than enough memorial funds for a special plaque to be placed on the tribute wall at Children’s-St. Paul – I can’t count how many times I have walked by that wall and said a little prayer with a pang in my heart, imagining how it must feel to have your child’s name up there. Now we know – and now we fully grasp how important it is to know that your child is remembered.
Sunday, October 20, 2002 at 10:57 PM (CDT)
Paul returns to work tomorrow (yet again, we owe many thanks to his wonderful boss and co-workers at Aveda for the generous time off), and I have been making lists of things to do to try to keep busy during the long, quiet days ahead. We have spent the past week or so just trying to make sense of life without Charlie. I hadn't realized how much our days were structured around him, especially since his cancer diagnosis in June. Caring for him never felt like a burden, but suddenly I'm faced with a yawning chasm of free time. There are, of course, plenty of things to do around our long-neglected house, but none of those tasks are as satisfying as taking care of Charlie was. Fortunately, Jack is doing his best to fill the void -- he is so ready to take off crawling, and keeping him away from household hazards will soon be a full-time job. Without a doubt, Jack has been our saving grace. He is such a delight -- he just oozes joy, and it's impossible to feel gloomy around him for long. In return, he has been getting more than his fair share of hugs and kisses. Liam continues to be a wonderful big brother, playing patiently with Jack, reading to him, and following him around with pillows so he won't tip over and whack his head. We celebrated Liam's seventh birthday this weekend and I think it was truly a good birthday for him, despite Charlie's much-felt absence. Liam has been surrounded by family and seems to be doing as well as can be expected.
We have gradually been dealing with the artifacts of Charlie's unfinished life -- the little shoes and jackets waiting by the back door for their owner to return, the backyard swing where Paul pushed Charlie for hours to keep his mind off the miseries of chemo, and, most heartbreaking to me, the little empty bed. I dread putting Jack down for the night and then tucking in Liam, next to that abandoned bed. This is the hardest time of day for me, so I'll try to fill it up whenever I can by visiting Charlie's web page and talking to anyone who might still be out there, checking it. We have been so encouraged by the overwhelming tide of love and support flowing in, especially over the past two weeks. Knowing that Charlie's short life held meaning for so many people is the only thing that makes this grief bearable.
I've had some requests to describe the tribute fund we've set up in Charlie's name to benefit the Child Life Fund at the Children's Hospitals and Clinics Foundation -- I can hear Jack stirring, just in time for his accustomed 11 p.m. feeding, but I'll post info about the memorial fund in the next day or two. Thanks for sticking with us!
Friday, October 11, 2002 at 12:48 PM (CDT)
Charlie's funeral yesterday was beautiful, full of the rainbow colors that he loved, and even though a beautiful funeral was certainly never what we dreamed of giving Charlie, it was comforting to remember and celebrate his life in a way that fit him.
As I should have known, the church was packed, with people standing in the back, and it was heartening to see so many of the doctors, nurses, teachers, therapists, and others who took care of Charlie throughout his life, among our friends and families, our distant relatives, our relatives' friends, our friends' relatives... truly, Charlie had a LOT of friends. I think that the part of the service that meant the most to me was our rector's reminder of the prayer we had said for Charlie on the triumphant occasion of his baptism: "Give Charlie an inquiring and discerning heart, the courage to will and to persevere, a spirit to know and to love you, and the gift of joy and wonder in all your works." He spoke of Charlie as the perfect embodiment of that baptismal prayer, and that helped me to see his life as having been more abundant and more complete than his few years would belie.
Below is Charlie's eulogy (which was delivered beautifully and so movingly by my dear friend Carla -- the one person we knew who could pull it off without turning into a puddle):
Charlie’s Story
Charlie was born four years ago today in a tremendous hurry, four months before his due date, refusing to wait for the doctor to scrub for an emergency C-section or for Paul to park the car. I’ll never forget the stricken look on Paul’s face when he saw his tiny son for the first time. His one-and-a-half-pound body seemed impossibly fragile, small enough to curl into the palm of my hand, and yet every part, down to his tiny fingernails, was perfectly formed. One of his NICU nurses dubbed him “Teeny Kiehne,” but his size was no reflection of the enormous spirit contained in that little body. He immediately set about putting gray hairs on our heads, but survived crisis after crisis in the NICU and taught us never to underestimate the strength of his spirit. After months of struggle, he came home to join his adoring big brother, Liam, and the real adventure began.
Charlie’s prematurity left him with feeding and sensory difficulties and it took him a long time to learn that eating is a good thing, but nobody could doubt his appetite for life. As Charlie emerged from infancy and blossomed into a perpetually cheerful, exuberant little boy, we delighted in watching him take on the world. Charlie took the party with him wherever he went, and Paul and I marveled that we had somehow spawned this sunny little extrovert. Brightness was his signature, from head to toe -- Charlie loved to wear fancy socks, and his favorite ones had rainbow stripes. We cherished those bright little feet and remember with fondness the bounce in his step as he went out to greet the world. And the world greeted him back. Everywhere he went, people responded to Charlie in a way that we have rarely seen.
At the core of Charlie’s bright spirit was a toughness that constantly surprised and inspired us. On the day that Charlie was diagnosed with liver cancer, we were calling our families and friends to tell them the news, and expressing our confidence that he would beat the cancer. Charlie piped up, “I’m a tough guy, Mom – as tough as a buffalo.” From then on, the buffalo became his totem and reminder to us of his stout heart. He took on the cancer with steadfast courage and confidence.
Except when he didn’t. Our hearts broke as we watched him struggle with pain and sadness during the early months of his cancer treatment. But his resilience amazed us again, as he learned to control what he could, and endure the rest. We grieve to let go of one who loved his hard-won life so fiercely. After a difficult summer of surgery and chemotherapy, Charlie went into his cancer surgery on top of the world, feeling strong, brave, and sure of victory over his “silly tumor.” It was not to be. Charlie’s body and spirit fought together long and hard to recover from the terrible and unexpected blood loss he suffered during the surgery. The night before he died, I dreamed that Charlie yanked out his breathing tube, hopped down from his bed, and headed for the door of the PICU, chatting all the while. Perhaps that was his spirit bidding me farewell and lighting out for paradise.
Charlie had two ambitions in life. One was to have a rainbow cake for his birthday, a fact which he took care to remind us of several times each day. “It needs to have four candles, because I’m going to be four years old,” he instructed, “and don’t forget the indigo and the violet.” We will honor that wish today, his long-awaited birthday. Charlie’s other ambition was to grow up to be a daddy, just like the Daddy he adored beyond words. He was not interested in talking about astronauts or firefighters – he just wanted to be a daddy, and wondered where we would put his daddy-sized bed when he grew up. Just as I will never forget the look of heartache on Paul’s face on the day of Charlie’s birth, I will remember forever the tenderness with which Paul rocked Charlie for hours on end as he struggled with pain and sickness from the cancer.
We will miss every square inch of Charlie’s precious body – with such pleasure we watched that small, fragile body grow strong and powerful. Charlie’s mind amazed us – he savored words, devoured books, and talked, and talked, and talked, so much that I occasionally sought refuge from the barrage of chatter by fleeing to the bathroom for a few minutes of silence. But it was Charlie’s spirit that touched us to the core, and has touched so many around the world, as we have seen from the messages left on his web page from places as far flung as Japan, South Africa, New Zealand, and even Antarctica. Our faith assures us that his spirit is eternal and will again be joined with ours, in God’s time.
Just as Charlie died in the same hospital where he was born, we have come full circle to memorialize him in the place where he was baptized, on the anniversary of his terrifying, yet joyful birth. During one of Charlie’s recent crises, I wrote that I didn’t believe Charlie’s story would end here. I KNOW now that it doesn’t. His earthly story has been cut short much sooner than we had hoped, but we know that Charlie’s story continues to be written in the hearts of those who knew and loved him, and we will go forward with gratitude for the gift of his extraordinary life.
Tuesday, October 08, 2002 at 06:02 PM (CDT)
Just a quick note to let everyone know about the plans for Charlie's funeral. All who wish to remember Charlie and celebrate his life with us are welcome to attend! The funeral will be on Thursday, October 10th (Charlie's fourth birthday, so bittersweet) at 1 p.m., with visitation from 11 a.m. to 1 p.m., at St. Matthew's Episcopal Church in St. Paul. The church is located at 2136 Carter Avenue -- here's their website for directions: www.stmatthewssap.org. The church's phone number is 651-645-3058, and our phone number is 651-487-6404, for anyone who would like more details.
It has been good to be busy today -- making plans and handling details leaves us with a little less time to cry. Thank you for the tremendous outpouring of support -- it is a great consolation to know that Charlie touched so many during his short life.
Below is the obituary we've sent for tomorrow's paper -- it's hard to encapsulate even such a short life in so little space, and I look forward to going on at great length when I sit down to write his eulogy tonight and tomorrow.
Kiehne
Charles (Charlie) Clark, age 3, of St. Paul, passed away Oct. 7, 2002, after battling liver cancer. Charlie entered the world fighting, born 4 months prematurely. Through God’s grace, medical miracles, and the love of his family and friends, Charlie grew into a strong, bright, exuberant little boy who dearly loved his hard-won life. For too brief a time, he brightened the lives of his parents, Paul and Terese, devoted big brother Liam, and baby brother Jack. Charlie lived his life surrounded by the love of his extended family and countless friends. We cherished his life, mourn his death, and will carry him in our hearts, until we meet again. Funeral service Thursday ,October 10 at 1 pm, St. Matthew’s Episcopal Church, 2136 Carter Ave., St. Paul, with visitation at the church from 11 am to 1 pm. We give thanks for the remarkable nurses, doctors, therapists and teachers who cared for Charlie throughout his life. Memorials may be given in Charlie’s name to the Child Life Fund, Children’s Hospitals & Clinics Found., 2910 Centre Pointe Dr., Roseville, MN 55113.
Monday, October 07, 2002 at 06:03 PM (CDT)
Heaven's newest angel has rainbow socks and a devilish wit. Charlie, our cherished gift from God, passed away this afternoon, after fighting so long and so valiantly for the life he loved.
This morning, Charlie suffered a pulmonary hemorrhage and it soon became apparent that his bleeding could not be controlled. A CT scan showed bleeding in his brain and belly, despite the deluge of platelets and coagulants Charlie had been receiving in the PICU. It was clear that there was no hope of stabilizing him enough to receive a liver transplant, and no hope that his own failing liver could produce the clotting factors needed to stop the bleeding. With good counsel from all of Charlie's doctors, Paul and I decided to withdraw the life support and let him die peacefully, free from the tubes, wires, and machines that were too much a part of his short life. He never woke from the sedation, and was free from all pain as we rocked him out of this world and into the next. Sweet dreams, Charlie. We won't forget to turn off the light.
Please keep Liam in your thoughts and prayers -- his grief is very great and he will have a hard time making sense of this loss -- Charlie was not only his little brother but his dearest friend and co-conspirator, and he will miss him terribly.
We will post the funeral plans to the website, as soon as we have made them. Thank you to all for your constant support, encouragement, and prayers. I am afraid we will need them now more than ever.
Saturday, October 05, 2002 at 06:26 PM (CDT)
Sorry to leave you hanging yesterday -- now you'll have to endure an extra-long update. Yesterday brought mixed news, as usual. First, the great news is that the second team of pathologists concluded unanimously that Charlie's tumor was removed with clear margins, leaving no residual tumor -- that's their final answer. Unfortunately, whether or not Charlie can survive the "cure" is still an open question -- and he would still need at least two or three rounds of follow-up chemo as soon as he's well enough.
When Charlie's oncologist came around yesterday, he looked much sunnier than usual and was pleased with Charlie's cardiovascular and respiratory progress. He made some phone calls to find out why the transplant surgeon from the U of M still hadn't shown up. Turns out that the reason he hadn't come over yet is that Charlie would be ineligible for a liver transplant at this time because of his continued need for blood pressure support and the ventilator -- they have had no successful outcomes with children in such a condition, so would not do a transplant until they resolved. That sounded like bad news, but the more positive angle on it is that Charlie seems to have a good chance of hanging on while the blood pressure and respiratory issues continue to improve -- the continuous dialysis not only takes over for his failing kidneys but also removes some of the toxins that his liver is usually responsible for, and the blood products and medications he's getting can continue to support other key liver functions, for awhile. They're finding that children can withstand liver failure for some time, with intensive care. It was somewhat encouraging to learn that his current (but quickly improving) respiratory and cardiovascular status are the limiting factors for transplant, but not necessarily his renal failure, which might improve after transplant, if it's a hepatorenal syndrome, which is common after the systemic inflammatory response caused by his blood loss during surgery.
And then the picture changed a bit more this morning, with the news that Charlie's liver enzymes actually went up a little bit today for the first time. I got a little primer in "good" vs. "bad" numbers for liver enzymes today, which I'll pass along: they rise only in response to liver cells being injured, so usually an increase in liver enzymes is bad news. But in Charlie's situation, the docs were getting worried that Charlie's enzymes, which started out appropriately very high due to the liver resection, continued to fall without stopping. That led to fears that they would bottom out at zero, meaning that there simply was no more functioning liver cells to be injured and release enzymes. The fact that they rose slightly today gives more hope that the liver is at least functioning enough to show signs of injury.
Then, to complicate matters a little more, one of the Minneapolis oncologists came over today on rounds and mentioned that they've been using the Mayo Clinic for all of their transplants lately (though she heartily endorses the surgeon from the U who consulted on Charlie's case), and offered to get in touch with the Mayo team. I asked whether she knew anything about their clinical trials with the bioartificial liver -- she wasn't familiar with that, but e-mailed the pediatric transplant team immediately and will let us know tomorrow morning what they had to say.
So back and forth we go on the issue of the transplant. Clearly, everyone's first choice is for Charlie's liver to gradually regenerate and work again, but if that doesn't happen, we would like to put as many safety nets under him as we can. The bioartifical liver and/or eventual transplant might bail him out if the current strategies begin to fail him, so we continue to pursue them, while looking hopefully for more signs that his liver is coming back on board. In the meantime, Charlie gets yellower by the day -- that isn't terribly alarming to the staff, since the jaundice is just a reflection of his liver's current inability to filter bilirubin. There just aren't enough cells to do it, which is no surprise to anyone. But that doesn't necessarily reflect on the liver's other functions, such as clotting, which seem to be slowly improving. It should all become much clearer over the coming days. It's hard to wait for an answer, but we would much rather wait hopefully than get a definitive wrong answer, so we'll just be satisfied with waiting, for now.
Thursday, October 03, 2002 at 10:01 PM (CDT)
Warning! Update by Paul ahead!
This afternoon continued the waiting game on both Charlie's liver and on a transplant doctor from the "U". I sped to the hospital from work when Terese called and let me know that a doctor from the "U" would be in to see Charlie this afternoon. By 9:30pm it was very apparent that he wasn't going to show. We very much hope that a transplant isn't necessary, but if it is we want to have everything ready.
Even more frustrating was the failure of not one, but two CVVH (dialysis) machines today. After the 2nd or 3rd failed attempt with the machine from St. Paul, the spare CVVH from Minneapolis was sent over. That one was no better, but the nurse from Minneapolis who came over with the machine was able to get the original St. Paul CVVH machine running around 9pm tonight.
Charlie is in better shape now than he was this noon, with the combination of the CVVH and being moved to his tummy again. His O2 sats are up, O2 requirements down, and he is still being lowered on the last remaining blood pressure medication (epinephrine).
Some of his drainage tubes are being very slowly removed from the second surgery site, about an inch every morning. This is to allow the eventual closing of the incision and final healing of that wound.
All for now, thanks for your prayers!
Thursday, October 03, 2002 at 11:31 AM (CDT)
We're still waiting for a letter of intent from Charlie's liver, declaring whether it plans to step up to the plate. His bilirubin continues to climb, although not as dramatically, giving us hope that it may plateau. He is nearly as orange as his bedmate, "Oranges Puppy," but at least he is uniformly orange, so they seem less worried about clotting in the inferior vena cava, which would likely affect circulation in his legs.
Charlie's surgeon came by this morning and we discussed the possible referral to the U of M transplant team. He agrees that it is a good idea to get that ball rolling, just in case the liver continues to fail. The blood supply to and within the liver appears to be adequate, so the main question is whether or not there is enough remaining parenchyma to regenerate the hepatocytes needed to do all that the liver does. I'm sure this is tough for his surgeon to see, as he had wanted to spare as much liver as possible, but the cancer's location gave him no choice -- if he had left gross residual tumor near the hepatic blood vessels, Charlie's prognosis would have been very poor. He told me today that if Charlie had had a little more tumor toward the left lobe before surgery, that would have tipped the balance toward transplant rather than resection. It was a difficult call, but given the overall higher risk involved with transplant, the resection was preferred. We all knew that excessive bleeding was a significant risk with either operation, but his surgeon, who is very experienced in pediatric liver resections, has never had this outcome before. In addition to the necrotized tumor compressing the vena cava, it appears that Charlie had some abnormal vascularization in is liver, a proliferation of vessels too small to appear on the MRI studies, and they bled like crazy -- we wonder if this has anything to do with his prematurity.
So, however we got here, we are here, still waiting for signs of liver function. Charlie's oxygen needs increased a bit overnight -- that was a little discouraging, but could be chalked up to low hemoglobin or fluid from the bronchoscopy done yesterday evening. The bronch went fine, but they had to go a little deeper into the lungs this time and left more fluid behind. The nodules did not look like embolisms or tumors, although they're sending cells to pathology, just to be absolutely certain. Charlie's temperature went up a bit last night to 37.5 (normal is 37), and his white blood cell count increased a little, leading to talk of possible sepsis. He is already well-covered by antibiotics -- his oncologist brought in an infectious disease specialist on Monday to examine his antibiotic coverage and all of his lines. She made a few changes and added a potent anti-fungal, so we hope he is as well-covered as can be. The dialysis (CVVH) machine is down for the third time in a day, and Charlie's CVVH nurse keeps trying valiantly to get it up and running. As a result of the CVVH being down, his weight was up a little today, to 16.2 kilos -- his "dry weight" is 12.9, so he still has quite a bit of extra fluid to dispose of. His kidneys are still putting out scant drops of urine, but they may be the last organ to come back on board.
So we continue to wait, looking for hopeful signs. Thanks so much for all your encouragement, prayers, cards, food, and love!
Wednesday, October 02, 2002 at 12:34 PM (CDT)
Amidst all the high-tech interventions of the PICU, simply flipping Charlie over onto his tummy, a technique also known as "the poor man's oscillator," has provided the most dramatic improvement yet in his blood pressure and respiratory status. His oxygen needs on the ventilator have gone down to 55 percent, with stable sats in the low 90s. He has weaned off three of his pressors, and started to wean off the fourth. The move also promoted a lot of drainage from his surgical wounds, and it was good to get more fluid out of his belly. The bleeding has more or less stopped and the drainage is now the yellow serous stuff (apologies to anyone who is checking this while eating their lunch!). Seeing Charlie on his tummy is a psychological boost for us, too -- he looks a bit more as if he's just sleeping it off, and it's nice to see his cute little bottom again!
We had a long chat with the intensivist who's taking care of Charlie most of this week. While he certainly can't give us a rosy prognosis for Charlie yet, he assures us that time can still play a signficant role in his recovery. The systemic inflammatory response that occurred as a result of his tremendous blood loss can subside with time and support, although it will leave behind ischemic or dead tissue in his organs, and the effect of that remains to be seen. They all feel that it is still too soon to write off his liver, and explained a little more about why it's difficult to determine yet whether the liver is functioning now. When Charlie's gastroenterologist visited this morning, he said essentially the same thing -- because of all the medical support Charlie is getting, it's difficult to determine how much his liver is doing, and stopping the support to do further tests would be too dangerous at this point. One small note of hope he mentioned is that he doesn't think the PICU could be supporting some areas, such as blood sugar, as well as they are, unless his liver was contributing at least a little.
We also discussed the possibility of a transplant with the intensivist and gastroenterologist. It reassured me somewhat to hear that we can allow Charlie a little more time to stabilize and heal before that would need to be considered. The GI doc feels that the liver will declare itself, one way or the other, within a week or so. He agrees that it is wise to make contacts with the U of M transplant team before then, in case a transplant does become Charlie's only hope. The improvement in Charlie's blood pressure and respiratory status at least gives me some hope that Charlie might be accepted as a transplant candidate, should that become necessary.
On Charlie's agenda for this afternoon are an abdominal ultrasound to look for potential blood clots, which could indicate liver failure, and a bronchoscopy to check out some nodules in his lungs that showed up on the CT scan, which may be a sign of infection -- they are NOT thought to be tumors, Charlie's oncologist says. Given his propensity to look on the dark side, that seems reassuring. I'm learning that when I see Charlie's oncologist coming, I should probably walk briskly in the other direction unless I want to be depressed for the rest of the day. He is a very caring, sweet man and an excellent doctor who is working hard to make sure that Charlie gets the most thorough care possible, but my blood pressure goes up ten points every time I see him lately. Paul and I have always appreciated candor from Charlie's caregivers and have always sought out all the information we can, but there has just been too much bad news to absorb in the past week. We need a little time to savor small victories, like the clear head CT and respiratory improvements, and a little bit of room to hope.
Wednesday, October 02, 2002 at 11:28 AM (CDT)
Paul here with a quick update until Terese can do her full report tonight.
Charlie was moved to his tummy at about 8:30 last night, and within an hour showed improvement in his oxygen levels and blood pressure. I went home after the damn ('scuse my French) Yankees went ahead of the Angels (we always root for more angels), as Charlie was very stable.
This morning brought more good news. Charlie's blood pressure was higer and stable, and his oxygen saturation was also very good. He was weaned off of two of his blood pressure medicines (butamine and dobutamine) overnight, and the medical staff was in the process of determining which of his other blood pressure medications to wean next. His oxygen level in the ventilator was reduced to about 55% (room air is about 21%).
His G.I. doctor came around this morning and said we still need to wait for his liver to respond, but that the Children's medical staff would be in contact with the transplant team at the "U" to start getting everything ready in case a transplant becomes necessary. I've already told them to not stop at the liver and give him one of my kidneys too, but that may be too much :)
Thanks for everyone's prayers, cards and food!
Tuesday, October 01, 2002 at 06:00 PM (CDT)
Charlie's head CT showed no bleeding in the brain -- we suspected and hoped that that would be the case, but it is nice to have it confirmed.
But it seems as if we can't get a little good news without some bad news tagging along -- the CT of Charlie's abdomen showed a great deal of swelling in his liver and bowel, and some of his lab results today have his doctors concerned about whether his remaining liver is functioning at all. Charlie's bilirubin was higher and he is looking more jaundiced today. He has had a tough time keeping his sats above 82 or 83. They're going to try flipping him (very carefully) onto his tummy, as that might give his lungs more room to expand and clear up areas of adalectisis (essentially, plugged air sacs). Tomorrow, Charlie's gastroenterologist will come by to see if he can offer any advice. Unless the liver begins to show more signs that it is functioning, the only option may be a liver transplant. Paul shares Charlie's blood type and would readily be a living donor for him, and other O-negative family members are lining up behind him, but it is unknown whether Charlie would meet the criteria for tranplantation, given the fragile state of all of his systems.
But we are still hopeful that Charlie just needs more time to heal. His temperature was more stable today, and he needed a little less support for his blood pressure, so we'll take those as good signs. When I checked in with the night nurses this morning, they told me that Charlie wiggled his eyebrows and opened his eyes a little, while supposedly still under the paralytic. They asked him to wiggle his toes on one foot, and he did -- then they asked him to wiggle his toes on the other foot, and he wiggled those, too. I told them that the truly amazing thing is that he obeyed them!
Thanks for checking in. We hope that tomorrow will bring better news.
Monday, September 30, 2002 at 02:14 PM (CDT)
Charlie is still in critical condition, but has remained pretty stable for the past 24 hours. For the most part, the numbers that need to be up are up, and the numbers that need to be down are down -- his sats, temperature, blood pressure, and hemoglobin have increased or held steady, and his ventilator settings, weight, liver enzymes, and creatinine (an indicator of kidney function) are down. He is continuing to produce a little urine, which everyone is excited about -- yippee for pee!
There has been a little concern expressed about Charlie's neurological status, as his pupils are quite dilated and increasingly sluggish in response to light since about Saturday afternoon. Yesterday, he was very slow to respond to his daily "wake-up." He has been in a medically induced coma since Tuesday's surgery, but once a day the staff holds his paralytic medication for awhile to allow him come out of sedation just enough to wiggle his hands and feet, to make sure that everything is still intact. He was coming out of the paralytic just before he went in to the emergency surgery on Saturday, and it was encouraging to see him move a little before he went in to the OR. But it took him several hours longer than usual to respond when the paralytic was stopped yesterday, and he only widened his eyelids a little, without any hand or foot movement or definite pupil response. The intensivists hoped that this had to do with acidosis in his blood, which can cause the paralytic to be metabolized more slowly than normal. After they treated the acidosis, he responded to his "wake-up" much more quickly today, with more vigorous movement, but his pupils are still dilated and sluggish. Just to rule out any bleeding in the brain, he will have a CT scan of his head tomorrow, if he's stable enough to be transported to radiology. Paul and I are pretty confident that the CT won't show anything alarming, but it will be good to know for sure.
On rounds today, the students were curious about Charlie's long-term prospects, given his multi-system organ failure (one nice thing about being in a teaching hospital is that sometimes the students and residents ask the questions that we're afraid to ask), and the intensivist certainly held out hope that Charlie's organs can recover and function properly again, especially if his respiratory status remains stable. "And besides," he added, "Charlie is as strong as a buffalo." They know it -- and as tough as one, too!
Sunday, September 29, 2002 at 05:49 PM (CDT)
Well, Charlie took several more years off our lives last night, but clung to his own, proving once again that he is, indeed, as tough as a buffalo. As Grandpa wrote, yesterday afternoon Charlie began bleeding at an alarming rate from one of his surgical drain sites. One of his nurses stood beside him for hours, applying pressure to slow the bleeding. His oxygen saturation levels dropped again and simply could not be supported with any of the many medical interventions that the doctors were trying. It became clear that emergency surgery, though high-risk, probably offered Charlie the best chance of survival -- the doctors agreed that, although the surgeon was unlikely to find a stoppable source of the bleeding, draining the accumulated fluid from his abdomen could at least relieve the pressure on his diaphragm and allow his lungs to expand more fully. Even though it was hard to send Charlie into surgery in such an unstable condition, it wasn't a difficult decision to make -- it was clear to everyone that he couldn't survive long without some kind of intervention.
The anesthesiologist acknowledged that the five-minute trek to the operating room was a significant risk, in Charlie's unstable condition. As Grandpa described, the PICU and surgical teams orchestrated a hurried parade to the OR -- Charlie was now up to 17 IV pumps and just getting out the door was a challenge. He couldn't be moved on the vent, so the anesthesiologist bagged him furiously all the way and it was somewhat encouraging that at least they made it that far.
Then, we waited. Even though Charlie has faced some very worrying, life-threatening crises before, this was the first time that I truly felt we might lose him -- it just seemed impossible that he could survive when his body was already such a wreck from the resection surgery. The amount of medical intervention he was getting just to keep him in this very precarious state was staggering, and I just didn't see how he could take any more. To give myself something to do while we waited, I retrieved my pump from our sleeping room to pump some milk for Jack, and sat alone in one of the small surgical waiting rooms, wondering how Liam was going to grow up without his best friend and praying for some peace and strength to get through this. And then there it was -- the same sudden sense of calm that came to me in the middle of the night before Charlie's official cancer diagnosis. Before the definitive ultrasound and CT scan, I had read enough about painless abdominal masses to know in my gut that Charlie had some form of cancer, and I had spent a sleepless night worrying that we might lose him. Back then, the same sense of calm had taken over. Last night, it was just a quiet inner voice that said, "Stop it -- this is CHARLIE we're talking about. He's The Boy Who Lived," (with apologies to Harry Potter!). So I dried my tears and waited with at least a small sense of hope.
When the doors of the OR opened and I heard one of Charlie's IV pumps chiming as they wheeled him out, it was the sweetest music I have ever heard -- at least we knew he was still alive! We rushed out and caught a glimpse of his monitor as they wheeled him by -- his sats were 89, the highest they had been in hours, and he was beautifully pink. The anesthesiologist said those magic words: "He's doing a lot better," and I don't remember my feet touching the ground as we ran up the steps to meet his elevator back on the third floor.
Charlie still has a long, long way to go, and it is possible that he'll end up in the same position in a couple of days, but as one of the intensivists said, the surgery bought him some time and space to heal, and they'll take that for now. As the doctors suspected, there was no single source of bleeding, just a lot of oozing from the raw edge of the liver, but they drained 1.2 liters of old blood and other fluid from his abdomen, installed more drains, and left the surgical wound partially open to ease pressure in his belly. They will allow the oozing to continue without pressure dressings and support his blood pressure and clotting ability as best they can. He has had a much more stable day, with sats in the high 80s or 90s and acceptable blood pressures, aside from a few tense minutes when the dialysis machine starts up. His kidneys have even produced about 2 ounces of urine since midnight, certainly an encouraging sign.
We are so grateful for the unflappable nurses and doctors (well, I guess they were somewhat "flapped"), who scrambled to get Charlie through this crisis -- for several hours, most of the PICU staff was taking care of Charlie in one way or another and they had to close the ward to new patients. Even his veteran nurses are sprouting a few new gray hairs. One of them joked that Charlie owes her a bottle of hair color -- maybe Paul can arrange something with Aveda!
We know that the prayer chains were buzzing last night and we are so thankful for all who have sent us encouragement. We are glad to declare that Charlie lives to fight another day, and that has to be enough for now -- but tomorrow, I plan to ask for two days, at least!
Saturday, September 28, 2002 at 10:34 PM (CDT)
This is Grandpa Lewis updating the journal, since Terese and Paul are busy at the PICU tonight. Throughout the day, it became increasingly apparent that several of Charlie's vital signs were not responding to the medical treatment he has been receiving, despite the valiant efforts of the medical team. The major concerns centered around his continuing low blood pressure and the fact that his oxygen sats were not sustaining levels high enough to be satisfactory. It became clear that the major culprit in this situation was internal bleeding.
After a number of consultations among the medical staff, it was determined that consideration should be given to returning Charlie to the operating room to attempt to find the cause of the bleeding. The surgeon carefully explained that it is often very difficult, even impossible, to find the exact source of the bleeding. Given the fact that Charlie was showing no real improvement in his condition, the surgeon felt that the potential benefit of opening him up again outweighed the substantial risk involved. So the decision was made to proceed, and a surgical team was called in.
Speaking for myself, I was at the low point in this journey with this turn of events. I simply could not imagine how this was going to work, but I decided to just trust that the staff was making the right decision, and to further trust God in the matter.
The first big challenge was physically moving Charlie and the 14 or so pumps, lines, and other equipment from the PICU on 3rd floor down to the operating room on the second.
But they accomplished the move, and Charlie went into surgery for the second time this week.
After about two hours, I saw people emerging from the OR, and as I stuck my head out the door of the waiting room, I heard five sweet words from the anesthesiologist, "He's doing a lot better". Charlie and his equipment and entourage returned to the PICU intact, and both his blood pressure and oxygen sat readings showed much improvement. It goes without saying that this was a very difficult evening, where expecting the worst became too much a part of it. But for now, things are looking better, for which we are extremely grateful. Please keep Charlie and his family in your thoughts and prayers
Friday, September 27, 2002 at 11:27 AM (CDT)
It looks as if Charlie is very slowly heading in the right direction. His oxgen saturation levels have gradually crept up to about 90, and they have even been able to gradually turn his ventilator settings down so that he's getting only 65 percent oxygen, leaving a little room for him to backslide. The intensivist who was on last night had been helping to make preparations yesterday for the transfer to the U. to put Charlie on the heart-lung machine, and he was very pleased with Charlie's turnaround (I think his exact words were "Woo-Hoo!") When the other intensive care docs returned this morning, they were also surprised and pleased at Charlie's more stable respiratory status. He still has a long, long way to go -- his liver and kidneys aren't functioning at all yet and his blood pressure is still very low. He remains critical, but not in the imminent danger he was in yesterday afternoon. His blood chemistry and labs are still very much out of whack, but improving.
This morning, I saw a little smile on the face of Charlie's oncologist for the first time in days. Yesterday afternoon, he was extremely worried about Charlie's survival over the next 24 hours, and he seemed to be getting a little concerned that we weren't appropriately hysterical. But we have certainly learned never to underestimate Charlie's strength, or God's grace. I just don't believe that Charlie's story ends here. There must be a fine line between faith and denial, and I'm not sure where we are on that continuum, but for now we continue to believe that, with time and the tremendous medical support he's getting, he will heal. It helps that his nurses yesterday had a good feeling about him. So do we!
Thursday, September 26, 2002 at 04:28 PM (CDT)
I've just run home to spend a few minutes with Liam, as the situation may change soon. The doctors have had a pow-wow and there might be a new plan for Charlie. His oxygen saturation levels have remained in the low 80s or high 70s, and the fear is that they could drift downward unless things turn around soon. They are considering a transfer to the University of Minnesota to place Charlie on a heart-lung machine (a.k.a. ECMO -- Extracorporeal Membrane Oxygenation) in order to give his lungs a rest and provide better oxygenation to his body. This would involve taking a large volume of blood out of a vein before it reaches the heart, oxygenating it, and then circulating it through his body by a pump -- his heart would be functioning (and it is fine) but would not be responsible for pumping much blood.
There are serious risks (bleeding or infection), so they are mulling things over and trying to decide whether ECMO is the best option for Charlie. If they are going to use ECMO, they would want to start it when Charlie would receive the most benefit, before a huge crisis hits. They don't have much leeway to work with concerning his sats, so they are making preparations so that they are ready if ECMO appears to give Charlie the best chance of healing and recovering. We are hoping that Charlie's sats will simply start to creep upward and, as I'm typing this, Paul just called to say that his sats have crept up a point or two over the past hour -- maybe all Charlie needed was the threat of another procedure! Charlie's white counts are going up, indicating the possibility of infection, which could explain the difficulty with his sats -- that's something they might be able to control. So we're just hoping for an upward trend, and to stay put, for now. For those who like to pray with specificity, as for sats in the 90s (or high 80s -- we're not that picky).
In other news, we got the preliminary pathology report, and we have dueling pathologists -- one feels that the tumor was completely removed, with clear margins, and the other feels that there is probably residual tumor remaining in the liver. Charlie's oncologist will be sending the tumor to another pathology team for review, so we should get a more definite answer then. Charlie is expected to have at least two more rounds of chemo after he recovers from the surgery, either way (that has always been part of the treatment plan), and it is possible, if a significant amount of tumor remains, that he would have to go through another, smaller resection surgery. But we're not thinking about that right now -- getting through the next 24 hours is enough to worry about. We'll keep you posted -- thanks for checking in.
Thursday, September 26, 2002 at 11:47 AM (CDT)
*****Update Problem*****
For some reason, my current updates are appearing not appearing on the main page, but show up in the journal history, so things are a little out of order.
Thursday, September 26, 2002 at 11:23 AM (CDT)
Charlie continues in critical condition, but we made it through the night without any alarming phone calls to the sleeping room. Charlie has been struggling with low oxygen saturation levels, and yesterday evening they added nitric oxide to his ventilation system to see if they could deliver the oxygen more efficiently. His sats improved a little bit (up from the high 70s to the low 80s), but they really need to come up some more, soon. This morning, he was switched to a new ventilator again, continuing with the nitric oxide but with a different pressure vent rather than the oscillator (Charlie has now annexed a second room in the PICU to contain all of his machines and other equipment). The new vent bumped him up just one or two percentage points, but every little bit counts. An insightful respiratory therapist came up with a way to thread a small feeding tube through the vent tubing and hook it up to the wall oxygen, essentially pushing away any non-O2 gases. If it works, she'll be the star of the day. One benefit to using the pressure vent is that Charlie can be re-positioned more easily to prevent skin breakdown, especially with the extreme fluid retention.
Dialysis began last night -- it took all day for the staff to get the machine set up and running, and Paul and I tried not to be too disconcerted that they were reading the instruction manual as they did it! We know that they have done this before, but it is a complex set-up. They are very slowly drawing fluid out of the blood and returning it to Charlie. We aren't seeing any decrease in swelling yet, but we hope it will work in time. Charlie's weight was up 8.5 pounds, which is a lot of fluid for a 28-pound body to deal with. His abdomen has become very distended and his surgeon just came by to investigate whether surgically inserting a catheter might help drain off some of the fluid in the abdominal cavity. An ultrasound later this morning should show whether that might be beneficial.
So we continue to wait for Charlie's body to start working again -- as one of the intensivist docs put it, his organs were stunned by the surgery and blood loss, and they're just trying to support him until his systems sort things out. We all feel that Charlie's color looks better today, and there have been no dramatic downward turns, so we're just waiting, hopefully and prayerfully, for thing to turn around and move in the other direction. Thank you for watching and waiting with us -- your support truly helps us through.
Thursday, September 26, 2002 at 10:37 AM (CDT)
Charlie continues in critical condition, but we made it through the night without any alarming phone calls to the sleeping room. Charlie has been struggling with low oxygen saturation levels, and yesterday evening they added nitric oxide to his ventilation system to see if they could deliver the oxygen more efficiently. His sats improved a little bit (up from the high 70s to the low 80s), but they really need to come up some more, soon. This morning, he was switched to a new ventilator again, continuing with the nitric oxide but with a different pressure vent rather than the oscillator (Charlie has now annexed a second room in the PICU to contain all of his machines and other equipment). The new vent bumped him up just one or two percentage points, but every little bit counts. An insightful respiratory therapist came up with a way to thread a small feeding tube through the vent tubing and hook it up to the wall oxygen, essentially pushing away any non-O2 gases. If it works, she'll be the star of the day. One benefit to using the pressure vent is that Charlie can be re-positioned more easily to prevent skin breakdown, especially with the extreme fluid retention.
Dialysis began last night -- it took all day for the staff to get the machine set up and running, and Paul and I tried not to be too disconcerted that they were reading the instruction manual as they did it! We know that they have done this before, but it is a complex set-up. They are very slowly drawing fluid out of the blood and returning it to Charlie. We aren't seeing any decrease in swelling yet, but we hope it will work in time. Charlie's weight was up 8.5 pounds, which is a lot of fluid for a 28-pound body to deal with. His abdomen has become very distended and his surgeon just came by to investigate whether surgically inserting a catheter might help drain off some of the fluid in the abdominal cavity. An ultrasound later this morning should show whether that might be beneficial.
So we continue to wait for Charlie's body to start working again -- as one of the intensivist docs put it, his organs were stunned by the surgery and blood loss, and they're just trying to support him until his systems sort things out. We all feel that Charlie's color looks better today, and there have been no dramatic downward turns, so we're just waiting, hopefully and prayerfully, for thing to turn around and move in the other direction. Thank you for watching and waiting with us -- your support truly helps us through.
Wednesday, September 25, 2002 at 11:48 AM (CDT)
We're having more flashbacks from the NICU. At 1:30 this morning, the phone rang in my sleeping room next to the PICU -- the attending intensive care doc told me that they had switched Charlie to a more powerful ventilator, and wondered if he had ever been on the oscillating vent before (he spent about two weeks on the oscillator when he was critically ill in the NICU -- it's not something you want to just walk in and see next to your child's bed, so I appreciated the heads-up). The oscillator more or less vibrates air into the lungs at high frequency and can be somewhat gentler on the lungs than the conventional vent. Charlie has tolerated the oscillator a little better and his oxygen saturation levels have crept back into the high 80s and low 90s. His endotracheal tube had been leaking air, so they reintubated with a different type of tube that provides a better seal. They are also working to control pulmonary edema -- Charlie's lungs are being overwhelmed with fluid as his body adjusts to the massive swings in volume he experienced yesterday, as well as the loss of so much liver, which is crucial to maintaining fluid balance. Right now things are, according to the oncologist, "as critical as they can get." Personally, I think they could get quite a bit worse and am taking consolation that he hasn't quite hit bottom (he HAS been there before, and we don't wish to return to the early days when the only thing keeping Charlie alive was an ambu-bag and a determined nurse).
Charlie's kidneys have shut down for the time being and he is retaining all of the fluids (blood products, medications, electrolytes, etc.) that are being infused, so he has become extremely swollen from head to toe. This morning, once he was a little more stable, the docs inserted a new line in his groin to begin a form of dialysis to gradually draw some of the excess fluid off, in a very controlled way so that he won't continue to experience massive shifts in volume. He is on two pressors, dopamine and dobutamine, to raise his low blood pressure, and epinephrine to help his heart beat more effectively.
Charlie is being attended to by an amazing number of people -- he has at least two ICU nurses assigned just to him (I haven't seen them stop moving yet) as well as other nurses and docs flitting in and out to help. Just maintaining all of Charlie's lines keeps them busy every moment -- at last count, there were 13 pumps going. We are comforted by the tremendous amount of care being devoted to Charlie -- every problem is being anticipated and the staff is working very hard to stay on top of things and keep him in the critical-but-stable category. The number of people taking care of this one little boy is staggering -- the surgeon told us yesterday that there were more than 20 people contributing to Charlie's care in the operating room. We are so grateful for their skills and devotion to their work.
So, we wait. I imagine Charlie's little spirit camped out elsewhere while his body is being repaired, and look forward to its return, when the coast is clear. Please keep those prayers coming -- Charlie needs them as much as ever.
Tuesday, September 24, 2002 at 08:43 PM (CDT)
Hallelujah! It's out! It's out!! It's OUT!!!
Or at least they think so -- the pathologists will need to examine the tumor to see how clean the resection was. It was a very difficult resection with extremely intricate blood vessel involvement and, as the surgeon put it, Charlie threw them a few curve balls. Shortly after 2 p.m., three operating room nurses rushed into the surgical waiting room, out of breath, and told us that Charlie was losing a lot of blood -- and would we like them to call a chaplain to come and sit with us while they worked to stabilize him? This was not the kind of update we were hoping to hear.
We spent a very quiet 30 minutes waiting for more word, and finally a nurse came back to let us know that the bleeding was under control and they had completed the resection. Charlie lost a tremendous amount of blood -- more than 2 liters, which is more than twice the total volume of blood circulating in his small body. I'll never look at a 2-liter bottle of soda the same way again.
The next two or three days will be critical (haven't we heard that one before?) as Charlie's systems deal with the massive assault of so much fluctuation in blood volume and the loss of about 80 percent of his liver -- the surgeons ended up doing an extended right hepatectomy, taking the right lobe and the medial portion of the left). With the many transfusions, his body temperature dropped very low, and there are lots of coagulation problems and metabolic issues to deal with, so he is expected to remain in intensive care for the next several days.
Charlie is intubated and we expect him to be on the ventilator for at least three days as he recovers. He is deeply sedated and paralyzed by medications, which is just the way we want him to be right now. He's warming up under a big air blanket and has nine or ten lines and drains from head to toe. Paul and I are having flashbacks from the NICU, especially since the first intensive care doc who came out of the PICU to talk to us today was the same neonatology fellow who called us at 5 a.m., almost four years ago, to tell us that Charlie had taken a turn for the worse in the NICU, and we had better come in quickly. The more things change, the more they stay the same.
I'll post updates as I'm able. Charlie crossed a major hurdle today, but hasn't quite cleared it, so we continue to request your thoughts and prayers as we get through the next few days. Thank you for your constant support!
Tuesday, September 24, 2002 at 01:50 PM (CDT)
Just a brief update (we'll see if I'm capable of brevity) while Charlie is in surgery. About three hours after we left Charlie in the operating room, his surgeon just sent word that they have begun resecting the tumor -- that's great news! They have been proceeding with great caution, and we know that Dr. Brennon wouldn't be trying it if he didn't have confidence they would succeed. They still have a long way to go, but we're relieved that they have been able to make a start.
Charlie was in great spirits this morning -- he was ready for a nap by the time they came for him, but has otherwise been a model patient. We'll keep you posted as soon as we can. Thanks for your continuous prayers and encouragement!
Monday, September 23, 2002 at 10:04 PM (CDT)
Tomorrow is the big day, at last. We said special prayers tonight, surrounded by family, and we feel that Charlie is going into the surgery much stronger than we had dared to hope three months ago, when he was reeling from the effects of the biopsy surgery and first round of chemo. He has come such a long way in that time and is going into surgery with a light heart and a little body that just won't quit. He chose "The Little Engine That Could" last night for one of his bedtime books -- it is the perfect story for him and I hope it gave him some inspiration for the days ahead.
Charlie's hearing test today showed that the chemo has caused moderate high-frequency hearing loss in both ears, a little worse on the left (above 3 kHz on the right and 2 kHz on the left, for those who are technically inclined). We suspected this might be the case, as we have noticed over the past week or two that he has been asking us to repeat things more often and has been telling me that he can't hear the words coming out of my mouth when I use my "quiet voice." I don't know whether this will affect his treatment plan, as he's due for two or three more rounds of chemo with the same ototoxic drug, Cisplatin. We're certainly inclined to push ahead with aggressive treatment to give him the best possible prognosis.
But for now, the surgery is enough to think about. It's scheduled for 9:45 a.m., and the surgeon has booked the operating room for about five hours, although he doesn't expect it will take quite that long. We'll try to post an update as soon as we can, but until then, please assume that no news is good news! In the meantime, I've put up some NEW PHOTOS in the photo album, to keep everyone occupied. Thanks for keeping Charlie in your thoughts and prayers.
Sunday, September 22, 2002 at 10:14 PM (CDT)
Charlie's clinic appointment went well, aside from a little scheduling glitch -- somehow, the appointment was left off the clinic's central schedule and it took awhile to work that out, but we ended up with plenty of time to talk with the oncologist about Tuesday's surgery. We looked again at the MRI films and he showed us that, although there appear to be areas of necrosis within the tumor, it is still fed by an ample blood supply, which makes us even more glad that the surgery is only about a day away now.
Tomorrow morning, Charlie will have his third audiology appointment to see whether the chemo drugs have damaged his hearing (the first two audiograms were normal), and we'll have a brief clinic visit so that his blood can be drawn to type and cross-match for transfusions during surgery -- for reasons we don't quite understand, that has to be done within 48 hours of transfusion, so they couldn't just use the blood that had been drawn on Friday for counts. The advantage of this extra visit is that we can leave his port accessed overnight to make things easier for him on Tuesday morning -- he feels so much more comfortable having the needle put in by the clinic's nurses, and they know all of his quirks and preferences.
Charlie is in great spirits and understands, as much as he can, that the day of the operation is coming soon. He has had a chance to ask questions of his surgeon and oncologist and seems to feel pretty comfortable with the whole idea. He asked the surgeon how he'll do the operation, and the surgeon explained that he uses his hands, as well as "special instruments." Charlie giggled heartily at that -- I think he envisioned the surgeon banishing the tumor with a tuba or a trombone. Charlie's weight was up to about 28.5 pounds on Friday, and we're ecstatic about that -- it's probably the most he has ever weighed, even prior to his diagnosis. I had just been hoping he could get back up to 27 pounds by the time he went into surgery -- the extra weight makes me much less worried about his recovery from the surgery and and the digestive difficulties that will probably resurface for a time.
On Monday night, our families are gathering here with Lyn, our deacon, to pray for Charlie. We hope you will join us, wherever you are, in thinking of our dear little guy and sending up a prayer for strength, comfort and courage to accompany him (and all of us) on this next leg of our journey. As always, we are thankful for your prayers, encouragement, and friendship.
Thursday, September 19, 2002 at 11:59 PM (CDT)
Today's meeting with Charlie's surgeon was both reassuring and sobering. Due to the highly vascular nature of the liver and its three separate circulatory systems, the risks of the surgery are considerable, but there certainly is no other good option. Dr. Brennom was pleased with the quality of the MRI study and showed us several possible ways that he may proceed. It appears that he should be able to remove the right lobe and leave the left lobe intact, but a small portion of the left lobe may need to be taken. He hopes that they can spare as much as 30 percent of the liver (20 percent is the minimum that Charlie can get by on), but cautioned that he won't know with certainty whether the tumor can be safely resected until he's in surgery. We briefly discussed the option of a live-donor liver transplant if total resection isn't possible, and where that could be done. Paul is the lucky one with Charlie's blood type (wouldn't you know it? He's always been a Daddy's boy), and he would be all too happy to share a chunk of his liver with Charlie. I don't think Charlie will need to go the transplant route, but it is good to have a general idea about how that would proceed, should it become necessary.
We do have great confidence that Charlie is in capable hands. Dr. Brennom has been Charlie's surgeon since he was six months old, when he had his gastrostomy, anti-reflux surgery, and hernia repairs. We could never have guessed back then that we would someday be calling upon Dr. Brennom's special expertise in pediatric liver resections. He has a very gentle, thoughtful manner and many years of experience, so we feel that Charlie is just where he needs to be.
It's anticipated that Charlie will recover in the PICU for the first few days, where he would benefit from the intensive nursing as his whole system recovers from the insult of the surgery. We'll find out more about what to expect in the days following the surgery when we meet with the oncologist tomorrow.
Yesterday's MRI went fine -- one of the two scanners broke down, so we were lucky that the appointment wasn't postponed, as most were. Charlie woke up from the sedation cranky and disoriented, which hasn't happened before. He was very disgruntled and nearly threw an uncharacteristic tantrum as I carried him out, because he was absolutely sure that he hadn't gotten his ride in the great big donut. He still refuses to believe that he slept through it. The hospital's child life specialists had offered last week to take pictures of things that happen while Charlie is out of it after the surgery, so he won't have a sense of "lost time." I'm beginning to think that's a very good idea!
Charlie continues to feel great and looks wonderfully chubby -- his undies are even getting a little snug! He and Liam have been busy counting up their riches -- Liam has convinced Charlie that they should pool the resources from their piggy banks to buy some Legos that Liam has had his eye on. Charlie has been happily going along with that plan, despite the fact that his piggy bank is considerably fatter than Liam's, which has recently been depleted by other Lego purchases. Liam may have a bright future ahead of him in the financial services industry.
I guess we'll hold on to Jack a bit longer -- he has had a few happier moments, chasing Cheerios around his high-chair tray with his chubby, little hands, which have all the dexterity of oven mitts. What he really needs is a full-time playmate -- we'll be happy to take applications for the position, available immediately. Jack can't pay much in the way of salary or benefits, but he can throw in a few perks to sweeten the compensation package, in the form of slobbery smiles and belly laughs!
Tuesday, September 17, 2002 at 10:08 PM (CDT)
Paul was a little puzzled the other day when Charlie bounced into the living room and announced with great excitement that the Eskimos are praying for him! I had been showing Charlie and Liam the photos of the Bible study group in Antarctica that has been praying faithfully for Charlie all summer. My friend Chris had gotten in touch with a group at McMurdo Research Station, after Paul had mentioned that Charlie had people on every continent praying for him, except for Antarctica. She forwarded me these photos long ago and, and I have kept forgetting to show them in the photo album -- it's limited to three photos at a time, so we have to keep rotating new ones through, and these kept getting lost in the shuffle. Please check them out, now that I've finally put them in the album! It has been such a blessing to hear from this very caring group and to know that they are praying for Charlie. We did have to break it to Charlie that they're not actually Eskimos (and that, in fact, there are no Eskimos in Antarctica), but he's touched, just the same!
Tomorrow begins the march toward the big surgery, with the sedated MRI/MRA to pinpoint the current whereabouts of the tumor and the position of the relevant blood vessels. Both of Charlie's previous sedated MRI's have gone well, so I'm not anticipating any difficulties. Charlie is looking forward to another ride in the REALLY big donut (as opposed to the big donut, which is the CT scan). We probably won't know the results until we meet with the surgeon on Thursday.
In the meantime, if anyone is in the market for a baby (slightly used, but in mint condition and still pretty cute), we’re taking bids on Jack. He has been such an easygoing, sweet little guy – up until now. He’s in the not-quite-crawling crabby stage and suddenly expects to be carried around all day and shown all the places that he can’t quite get to himself. It’s a good thing he’ll have Oma and Grandma around next week to do a little spoiling. I don’t think I’ll mind being at the hospital with Charlie for just a little while...
Sunday, September 15, 2002 at 10:26 PM (CDT)
Charlie has had a great weekend and packed in a lot of fun. He is walking with a little spring in his step again these days, and even ran from the living room to the kitchen yesterday. He's maintaining the weight he has regained after his initial losses, and is probably as well-upholstered as he has ever been. Charlie decided it was time to make biscuits again, so Daddy helped him with that on Saturday, and then we made a brief trip to the library. He has been very cooperative about wearing his mask in public -- we don't know what his blood counts are right now, but they were on their way downward at the clinic on Thursday, and we want him as healthy as possible going into the surgery. Charlie sent me to the grocery store with a long list of requested foods and was dismayed that I neglected to come home with all four kinds of breakfast cereal he wanted.
Today, Charlie and Liam helped paint a little section of our back gate that Paul had fixed a few weeks ago, and I think they managed to get more paint on the fence than on themselves -- I think I got some good pictures of that. Liam and Charlie have also been torturing Jack with their obnoxious new remote control toy, Bart Simpson on a skateboard. Ay, caramba!
At his clinic appointment on Thursday, we squared away a few more preparations for surgery on the 24th. After his MRI and MRA next Wednesday, we'll meet with the surgeon on Thursday, and we have an hour scheduled with one of his oncologists on Friday, so we hope to come away from that with a better idea of what the next few months might be like. The two or three rounds of follow-up chemo after surgery may be especially difficult, without full liver function to filter the chemo drugs. That makes us especially glad that these past few weeks have been so normal for Charlie -- the latest round of chemo barely phased him, after the initial side effects. He has learned to ask for frequent naps when the fatigue hits, and we certainly won't argue with that.
Check out the new pictures in the photo album, taken when cousins Max and Oliver were here last week!
Wednesday, September 11, 2002 at 08:59 PM (CDT)
Charlie continues to feel well, although his fatigue is growing as we get farther along in the chemo cycle. He's having another little bout with thrush right now, but that's a minor issue -- a seven-day course of medication should clear it up. He returns to the clinic tomorrow for his weekly chemo and blood counts.
Cousins Max and Oliver came for a visit yesterday (with Grandma and my sister, Robyn), and Charlie and Jack both enjoyed that. Eagerly anticipating their arrival, Charlie said, "Oliver is so cute -- he's a quiet baby," in contrast to Jack, who is anything but quiet. Max and Charlie had some great talks -- I wish they could be together more often.
On this day of profound sadness and remembrance, I am especially grateful for all of the family, friends, and strangers (but not for long) who have reached out to us this year. Our initial grief, shock, and fear for our country last September gave way to our more personal preoccupations as we came so close to losing Jack in October, and then had to slog through the three months of bedrest, until Jack's premature birth in January. Then there was the month in the NICU and his homecoming in February, and just when we all thought we were done with preemies, nephew Oliver's sudden appearance at 27 weeks in March, and his two months in the NICU, with his triumphal homecoming in May... and in June came Charlie's cancer diagnosis. This year has certainly shown us how precious each and every life is. I have no words to express my sorrow at so many lives lost, but we pray for comfort, peace, and hope for all who mourn.
Sunday, September 08, 2002 at 10:57 PM (CDT)
Charlie had a great weekend, starting on Friday with a visit to his school, where he enjoyed spending time with Miss Alice, Miss Ginny, Miss Bev, Miss Nancy, Miss Diane, and Miss Stephanie -- he is one lucky boy to have so many wonderful and caring teachers and friends.
On Saturday came a much-anticipated visit to Oma's and Opa's farm on Saturday, where he got to play with Sidney, drive Opa's remote control Humvee, and filch eggs from the chickens (while stoically wearing his filtration mask, of course). Paul packed up all three boys and left me blissfully child-free for almost twelve hours. I was able to tackle some long-overdue cleaning and organizing projects with no interruptions -- I had fantasized about seeing a movie and taking a long nap, but got too immersed in the house projects and missed my opportunity. I did enjoy a sumptuous dinner of Twizzlers, Pringles, and chocolate, so I guess that was enough decadence for one day.
Charlie was able to attend the first day of Sunday school today -- it will probably also be his last, for awhile, since we anticipate that his immunity will be dipping sharply again during the coming week, and we want him to be especially healthy in preparation for surgery on September 24th. I'm glad he has had a few opportunities to get out and about among some familiar faces -- these little outings mean so much to him and should help tide him over during the isolation to come.
Friday, September 06, 2002 at 08:40 PM (CDT)
We have a date! Charlie's tumor resection surgery is scheduled for September 24th, with an MRI and MRA (angiography to look at the blood vessels in the liver) on the 18th for his surgeon to prepare. As much as we look forward to having the tumor out, it's sobering to have it on the calendar. So much rides on the success of this surgery, and recovery will be much longer and more difficult than anything Charlie has faced before, aside from his most critical days in the NICU, perhaps.
Charlie's fourth round of chemo was kicked off on Tuesday, on schedule -- we've been lucky to experience no delays, thus far, to obtain the full potency of the treatment. Charlie landed prime real estate this time, scoring the room right next door to the playroom, and spent a very happy morning on Tuesday during the pre-chemo hydration phase, playing games and putting together puzzles. He put together three 24-piece puzzles and a mammoth 60-piece Thomas the Tank Engine puzzle -- I advised him a bit on strategy, but he put in every piece himself, he is pleased to tell anyone who will listen.
The effects of the Cisplatin were more immediate and intense this time, with more nausea and retching than he has experienced before. He spent the rest of Tuesday and most of Wednesday sleeping off the effects, and came home Wednesday evening. He's taking frequent naps, but is otherwise pretty perky -- I have lots of cute kid stories stashed in my head to inflict on you later, when I have some uninterrupted time at the computer.
Sorry to leave you all hanging for so long again -- with Jack and Charlie's frequent wakings, Paul and I have both been so tired, and when faced with a choice between updating the website and getting to bed before midnight, sleep has been winning every time, lately. My new-school-year's resolution is to aim for more frequency and less length -- we'll see if I can follow through with it.
Monday, September 02, 2002 at 09:29 PM (CDT)
Just a quick update -- I should be packing for the hospital instead. Charlie's blood counts looked good today, so we're set to start his fourth round of chemo tomorrow -- the last one before surgery to remove the tumor, in about three weeks!
Charlie has been feeling great, and now operates in one of two modes: A) Talking, or B) Asleep. We are elated that he is now back to up to his pre-diagnosis weight (about 26.5 pounds). He looks much healthier and is clearly more comfortable in his own skin. His natural cheerfulness shines through more and more. Charlie has always been a kid who just seemed to feel on top of the world -- that sunny air of confidence was submerged for awhile, but it's back, and Charlie is once again master of his little corner of the universe, or at least he likes to think so.
We decided to squeeze in one last day of summer today and took Charlie to the "fair." Due to immune supression, he had to sit out the real thing last week when the rest of the Kiehnes trekked to the State Fair and its throngs of germ-carrying folks, so we thought we might be able to substitute a few rides at Como Zoo, but Charlie wasn't buying it. As we pulled into the parking lot, he asked, dubiously, "Is there another fair?" He apparently remembers the authentic State Fair too well from previous years -- must be the Kiehne blood coursing through his veins. He had a great time at the zoo, though, and thoroughly enjoyed calling the shots, for a change. After searching out all of the animals, he took a quick spin on some cars and the merry-go-round. We were only there for about an hour, but the walking really sapped his energy, and he was asleep within minutes after we got back to the car.
Lucky Liam got to go on another fun trip, this time to a horse show in Iowa with Aunt Alicia, Auntie Heather, and Oma & Opa. He returned today, ready to begin first grade tomorrow. This has been the incredible disappearing summer, but I'm so glad we were able to slip in some good times, here and there, amidst the chaos.
Tuesday, August 27, 2002 at 11:44 PM (CDT)
It’s hard to believe that another week has flown by since my last update – we were too busy having a good time amid the Kiehne clan’s annual state fair extravaganza. Liam returned from a fun-filled stay with country cousins Matthew and Megan. Charlie was glad to have Liam home again, but hadn’t seemed to mind his absence too much – it gave him a chance to play with Liam’s new Legos, unmolested. Charlie has been feeling very good, aside from a little fatigue, and is once again talking from the time he gets up in the morning until he crashes at night, sharing any little thought that flits into his head. I really missed that non-stop prattle when he was feeling so poorly. I’ll admit that I have resorted to locking myself in the bathroom for a few minutes from time to time to escape the constant barrage of chatter and hear myself think for a moment, but I’m so glad to hear it again.
Jack was the star of the show yesterday, for a change. Charlie accompanied him to the NICU follow-up clinic to check on his progress at four months corrected age (Jack was nine weeks premature, but had a very smooth course in the NICU, with the exception of a grade II brain bleed). In honor of his stellar appointment, I’m declaring it Jack Day in the photo album, with NEW PICTURES of the little man and his big brothers. Jack is doing a great job in catching up – his height, weight, and head circumference are now on the charts compared to his full-term peers (height at 3rd percentile, weight at 8th, and head circ. at a staggering 50th percentile!). Jack had a blast during the developmental testing and loved showing off all of his tricks. His scores placed his mental age at six months and motor age at beyond six months, so we were thrilled with those results. . While these early tests don’t guarantee that Jack will be free of preemie complications as he grows, they certainly show that he’s moving in the right direction, at full speed. The NICU clinic will continue to follow Jack’s progress, particularly looking out for any effects of the brain bleed – he is still at risk for hydrocephalus, but they assure us, for now, that Jack comes by his big head honestly! We are incredibly lucky to have a pair of very bright-eyed preemies. Although prematurity has wreaked havoc on Charlie’s body and appetite, his cognitive, language, and social development have been blessedly normal.
My question about whether the NICU follow-up clinic has ever considered screening their very low-birthweight preemies for hepatoblastoma wasn’t very warmly received. The neonatologist noted that she was unaware of any connection between prematurity and hepatoblastoma. I have a stack of abstracts from the medical literature I’ll be sending her, as the link is well-documented, though certainly obscure. The rise in hepatoblastoma cases in the U.S. (as well as other countries) mirrors the increase in survival rates of very low-birthweight babies, with a sharp spike among babies who, like Charlie, were born extremely prematurely. The causes and risk factors are still unclear, but I do hope that a screening protocol will be devised to follow those at highest risk. A simple blood test done every three months between age 1 and age 3 might identify the cancer in a more manageable stage. Hepatoblastoma is such an aggressive and fast-growing cancer that it is typically not found until it’s Stage III (like Charlie’s) and too large and entrenched to be easily removed. Too often, the disease has metastasized by the time it’s discovered, and then the prognosis is very poor. Hepatoblastoma is still exceedingly rare and only affects a handful of ex-preemies each year (about 10-15 in the U.S.), but that’s just too many. I’m getting off my soapbox now…
Back to the clinic tomorrow for chemo and counts. We should find out if we’re still on track to start the fourth round of chemo on September 2nd. This has been a relatively easy round for Charlie, with just a few bad days, and he has handled those very well. We’re hoping for more of the same, with the surgery anticipated one month from now!
Wednesday, August 21, 2002 at 11:30 PM (CDT)
Charlie had an unexpectedly l-o-n-g day at the clinic today – it was supposed to be a quick appointment for chemo and counts, but the nurses couldn’t get any blood return from his port, indicating a clot in the catheter connected to his vein. Five or six nurses and nurse-practitioners tried every remedy under the sun for about four hours, until some clot-busting medication (TPA) finally did the trick. I was relieved that the clot was finally cleared, because the next step would have been a dye study and, more likely than not, surgery to replace the port. It was too bad that, just as Charlie was growing accustomed to the clinic routine and feeling comfortable with the procedures, he had to go through a lot of extra fussing around as the staff maneuvered his body into various positions to try to get the blood flowing again. The clot-buster didn’t work until they removed the needle and inserted a new one. By that time, most of the numbing effects of the EMLA cream had worn off so Charlie had to endure a quick poke as the port was accessed again. He handled it all like a little trooper, and certainly earned his toy from the clinic’s well-stocked “surprise” box today.
Charlie had been starting to feel better this morning, after a few days of fatigue and stomach upset, but the chemo this afternoon (Vincristine) really knocked him flat. Once again, his digestion ground to a halt and he spent most of the afternoon and evening in bed, feeling exhausted. Last week, the immediate side effects didn’t seem to last more than a day, so I’m hoping he’ll feel better tomorrow. We’re still trying to sort out which drugs are causing which side effects, and for how long.
Paul and I enjoyed our anniversary cruise on Lake Minnetonka last night, courtesy of Aveda (how thoughtful of them to schedule their annual operations party the evening before our anniversary so we could celebrate for free!). It was a dark and stormy night, but perhaps that was appropriate – when Paul and I said our vows nine years ago tonight on that balmy summer evening, I’m certain neither one of us imagined the maelstroms that lay ahead. Neither did we dream of the joys that awaited us: the satisfaction of scraping together enough money on Paul’s temp. wages (not even including my paltry grad student earnings) to buy a cozy little home; the tremendous enthusiasm, thoughtfulness, and creativity that Liam brings to everything he does; Charlie’s indomitable spirit and the surprising strength of his frail-looking body as it conquers challenge after challenge; and, last but not least (as Liam is fond of saying these days), Jack’s ever-ready grin and roly-poly charm as he coasts through a delightful babyhood. I’m so thankful that God has given me the perfect partner to share both the trials and the triumphs, as well as the family and friends who sustain us through it all. If it’s all the same to the powers-that-be, though, I’m putting in my request to celebrate our tenth on an up note, preferably in a remote locale, with a healthy Charlie & brothers tucked in somewhere far, far away and the cell phone nowhere to be found!
Sunday, August 18, 2002 at 07:20 PM (CDT)
Charlie had a wonderful time at Grandma & Grandpa’s, despite some last-minute misgivings about leaving home (check out the new photos in his album!). It did him a world of good to tromp around in the woods around my parents’ house, gathering acorns – we convinced him to leave a few for the squirrels. He went for a brief pontoon ride around the lake, had a ball playing with cousin Max, got better acquainted with baby Oliver, and ate part of a hot dog for the first time ever! The fresh air and exercise were great for him, and he was very much his old, chatty self. It was good for all of us to be reminded that the cancer treatment and its accompanying miseries are temporary, and normal life (whatever that might be – we don’t have much experience with that!) is waiting out there, to be resumed someday. I hope Charlie will be able to visit Oma & Opa’s farm at the same favorable point during the next cycle of chemo – he is certainly looking forward to it.
I’m glad we seized the opportunity to go before the delayed effects of the Cisplatin kicked in – Charlie started to feel poorly again yesterday and is pretty miserable today, with extreme fatigue and diarrhea again. It has set in a little earlier this cycle, but at least we knew to expect it. It helps to be able to see the pattern, and we hope that things will start to improve again toward the end of the week. In the meantime, he has lost all interest in food again and has been retching a lot. Because of the surgery he had as an infant to correct his reflux, he is rarely able to throw up, but he can get the job done when necessary.
I had a long talk with Charlie’s primary oncologist on Wednesday and we discussed the upcoming surgery to resect the tumor. It should take place, without delay, around the week of September 22nd, as soon as his blood counts have recovered from the fourth round of chemo, scheduled to start September 2nd. He feels that Charlie will be in relatively good shape for surgery, which was reassuring to hear. When Charlie began treatment, he was deemed high risk because of his tiny size and his underlying respiratory and kidney problems. They were quite worried about him, but are pleased with how well his systems are functioning now, despite the triple assault of tumor, surgery, and chemo.
Other than a visit to the clinic on Wednesday for Vincristine and blood counts, we’re anticipating a quiet week at home, waiting out the effects of the Cisplatin. We’ll keep you posted – in the meantime, check out the new pics! More to come...
Thursday, August 15, 2002 at 09:23 AM (CDT)
Just a quick update while Terese and the boys are at Grandma and Grandpa's for a brief vacation. (But for whom??)
Charlie has started round 3 of chemo this week, his in-patient stay for the cisplatin on Monday and Tuesday, then home for the night Tuesday and back to the clinic Wednesday for the 5FU and Vincristine. Charlie's appetite has dropped off with the latest round of chemo, but we anticipate it will go back up once the majority of the chemo drugs are out of his system. He is also very tired and a bit crabby, but nothing an hour of so of swinging outside doesn't fix.
Terese and I are looking forward to a night out next week as we spend our aniversary on a cruise sponsored by Aveda. We are just wondering how Aveda will pay for the helicopter to get us off the boat when our paranoia overcomes having a good time :)
Terese has promised a real update soon, so I won't subject y'all to anymore of my prose.
-Paul
Sunday, August 11, 2002 at 09:36 PM (CDT)
Charlie has had a great weekend! Aside from some fatigue and a major meltdown this evening as a result of taking no real naps today, he has been so cheerful and comfortable. He has continued to express a phenomenal interest in food and added corn on the cob and spaghetti WITH a little sauce to his repertoire (Tricia, his feeding therapist, will be picking herself up off the floor about now!). Megace, the medication he's taking to stimulate his appetite, is turning out to be a miracle drug for him. It's a hormone produced in pregnancy to increase expectant mothers' appetites, and it has been used to prevent wasting in AIDS patients for several years, but has only recently been tried in cancer patients, and even more recently in children. Charlie is definitely eating for two -- or would be, perhaps, if we weren't giving him tube feedings. The volume he takes in orally probably isn't more than 300 calories, but that is a tremendous boost to his daily intake and is helping him regain his lost weight. His cheeks are no longer sunken, his spine and ribs are less prominent, and his legs are even starting to fill out a little.
The kidney function tests on Friday went fine, but we won't know the results until tomorrow. Charlie handled the visit very well, and had no tears when I removed the tape from around his port. He cried a little before we started, but we played with the tape remover for a bit and I reminded him that it didn't hurt last time. He thought it over and calmed down, and was very pleased with himself when it was done. He instructed his nurse to bring him a cotton ball so he could catch the tiny drop of blood that forms when the port needle is taken out, and felt much more comfortable with the whole process. Spending a day at the clinic is still probably not at the top of his list of favorite things to do, though. I had given Liam a choice the night before, between coming to the clinic with us or spending the day at his friend Calvin's house. He chose Calvin's house (big surprise) and as we were picking him up afterward, Charlie said, "Okay, Mommy, the next time you will say to ME, 'Do you want to go to the doctor's office, or go to Calvin's house, and I will choose go to Calvin's house." Oh, how I wish it worked that way. Charlie enjoyed playing with Calvin and little sister Rosalyn for a short while, and got in some more play time with cousins Megan and Matthew this weekend. It's so heartening to see him enjoying himself again.
It's back to the clinic tomorrow morning to see if we're on for the third round of chemo to begin in the afternoon. We'll keep you posted!
Thursday, August 08, 2002 at 09:45 PM (CDT)
We're on the right track! The MRI done today showed that Charlie's tumor is being reduced by the chemotherapy. The left lobe of Charlie's liver is now free of tumor (it had previously been encroaching across the medial line from the right lobe into the smaller left lobe), and the hepatic artery has been cleared of tumor -- both of these changes make it more likely that the tumor can be safely removed by surgery after the fourth round of chemo. It was great news, and certainly an answer to the many prayers you have faithfully sent up on Charlie's behalf. The MRI showed a lot of necrosis in the tumor, so the thing is slowly but surely being killed off.
Charlie and I talked it over as I was getting him ready for bed. I told him that the doctor had looked at his tummy when he took the ride through the great big donut, and had good news -- the tumor is getting smaller, and the cells that his body doesn't need are going away. "Does it help the tumor get smaller when I eat my food?" he asked. "Well, yes," I replied, "when you eat, your body gets stronger and can fight those tumor cells better." "Oh," he said, "I think the 3D's are pushing the tumor away!" Those would be the Doritos Mini 3D's (miniature puffed Doritos, for those of you who are not snack food aficionados -- thanks for getting him started on those, Sue!), which he has been eating non-stop for the past few days. He had to be NPO (have nothing by mouth) for the MRI and was quite dismayed that he couldn't have his customary breakfast of 3D's and more 3D's. He tucked the canister under his arm when we headed out to the hospital this morning, with the plan of eating them as soon as he woke up from the sedation, and he did. Even before he was fully conscious, he was woozily shoving those little triangles into his mouth. At least they have 135 calories per ounce, and 2 whole grams of protein! He continues to try new foods -- today he ate about half an onion ring, complete with slimy onion on the inside, which in the past would have sent him screaming from the room, and yesterday he tried a taco cheese and pickle sandwich. We don't really care what form the calories take -- we're just thrilled that they're going in. As I told Charlie, we are so proud of his strong body and the hard work it's doing to help the tumor get smaller.
Tomorrow we trek over to Children’s-Minneapolis for another GFR, a lengthy kidney function test, to determine whether or not the next Cisplatin dose needs to be attenuated due to Charlie’s renal insufficiency. He squeaked by last time and was able to get a full-strength dose of the chemo, and we’re hopeful that tomorrow’s results will be the same. On Monday, we’ll have his blood counts checked at the St. Paul clinic, and if his immune system has recovered enough, he’ll be admitted in Minneapolis for the third round of chemo. He received G-CSF today to stimulate white blood cell growth, but the new cells may not mature in time to become full-fledged, infection-fighting neutrophils by Monday. In the meantime, we hope to enjoy a healthy weekend – Charlie becomes more like his affectionate, talkative, happy-go-lucky old self every day.
Wednesday, August 07, 2002 at 10:45 PM (CDT)
Charlie was feeling so good this afternoon and evening -- it was as if the clock had been turned back to early June, before this whole ordeal began. The tiny-whiny voice was nowhere to be found, and he was holding forth with great zeal on a variety of subjects. I had nearly forgotten what it was like to hear Charlie's non-stop chatter and wild theories. He and Liam put together a 50-piece jigsaw puzzle today, with a fair amount of brotherly cooperation and little help from me.
Today's clinic visit was another rough one for Charlie -- he may never get used to having his port accessed, but at least we feel sure that everyone is doing their best to make things as easy as possible for him. He acknowledges that it isn't painful, but he still panics at the thought. He announced to Daddy that he didn't cry when his port was accessed today, because it didn't hurt -- that's a bit of revisionist history, but it's good that he's reframing the experience in a more positive light.
The great news is that his weight was up today, to 25.1 pounds, despite battling diarrhea all week. That's the highest it has been since his biopsy surgery, not counting the days when he has been super-hydrated with IV fluids to receive Cisplatin. That gives us hope that we might be able to beef him up a little before his next surgery.
The chemo went fine, but Charlie's blood counts were mixed. His hemoglobin wasn't too bad, at 9.6, but the best indicator of his immune status, his absolute neutrophil count (ANC) was only 98 (anything under 200 indicates severe neutropenia, or immune suppression). In order for the next course of chemo to start on schedule, his ANC will have to climb back up to 500 by Monday. We'll go the clinic first on Monday, and if his ANC is okay, we'll head to Children's-Minneapolis to kick off Round 3.
Big day tomorrow -- we'll check into the short stay unit at Children's-St. Paul for an MRI at 1 p.m., which will be done under deep sedation, and then we'll meet with Charlie's primary oncologist to discuss the results and the current treatment plan. We'll post the results as soon as we can!
Tuesday, August 06, 2002 at 09:33 PM (CDT)
We made it through the night with no spikes in Charlie's temperature, and by late afternoon his temp. was moving back down toward the normal range, so it looks like we might make it through this round of chemo with no unplanned trips to the hospital! We'll return to the clinic tomorrow for chemo and blood counts, and a sedated MRI is scheduled for Thursday at noon to evaluate the effectiveness of the first two rounds of chemo. We're anxious to see the results, but feel pretty confident that the tumor has shrunk, judging by the state of Charlie's feeding button, if nothing else -- it's no longer being pushed sideways by pressure exerted on his stomach by the tumor, so we hope that's a good sign. If all goes according to plan, the third round of chemo will begin on Monday, August 12th, with another short inpatient stay.
Charlie showed up in our bedroom at 4 o'clock this morning and announced that he was ready for breakfast. "Let's make biscuits!" he chirped. I'm afraid I wasn't quite up to baking at that hour, especially after being up with him for half an hour at 2 a.m. and feeding Jack at 3:30. He had to settle for a little cheese at that time, but Paul did make him biscuits (from scratch!) before he left for work. Of course, Charlie didn't eat them, but crumbled them up into tiny bits on his plate. He continued to have a hearty appetite today, and ate the "yucky part" (sauce and cheese) of a tiny slice of pizza at lunchtime, but left the crust, his usual favorite, this time. He's probably only taking in about 200 calories by mouth each day, but that's far more than usual and he's thoroughly enjoying it.
Liam had a special outing today to spend time with his Sunday school teacher, Joan, and had a great time swimming and playing foosball. I think he's having really fun vacation so far, and went biking and swimming with Auntie Header on the weekend, lucky kid! And we're very lucky to have such caring friends and family around to help keep us going.
Monday, August 05, 2002 at 10:44 PM (CDT)
Today, Charlie enjoyed a visit from Oma and Opa (and dog Sidney, sporting her new summer haircut). Overall, Charlie had a great day, with a few rough patches. It was Liam's first official day of summer vacation, and he picked a good day to start it off -- the weather was beautiful. After enjoying the morning outside, helping Opa with Auntie Header's fence, they spent the afternoon out on the porch, where Liam taught Charlie how to play checkers -- the blind leading the blind, more or less, but they had fun avoiding the "hot lava" denoted by the red squares on the checkerboard.
The boys invited us up to their fort for a picnic supper. I wasn't sure we would all fit up there, but it was cozy, and Jack especially enjoyed the view. We feasted on leftover pizza and Charlie had another of his bizarre smorgasbords, sampling a little of just about everything in the fridge.
We're keeping a close eye on Charlie's temperature -- it has been slightly elevated all day, and rose a little more, to 100.0 degrees, axillary, at bedtime. 100.5 is the magic number that triggers a call to the on-call doc. We're on Day 15 after Cisplatin -- during the first course of chemo, he was admitted with fever and neutropenia (low white blood cell count) on Day 14, so we won't be terribly surprised if we find ourselves in the emergency room before the night is over, but we're keeping our fingers crossed...
Sunday, August 04, 2002 at 09:33 PM (CDT)
Today, Charlie seems to have finally turned a corner in coping with the after-effects of his chemo, and is having his first decent day since last Monday -- he has spent most of the past five days trying to sleep, sitting with one of us in the rocking chair, or being pushed in his swing. The diarrhea and digestive difficulties continued through early this morning, and then seemed to magically disappear, just as the on-call doc we talked to yesterday had told us to expect. Cisplatin, the inpatient chemo drug Charlie had on July 29th, causes irritation all along the digestive tract, and the only thing to do is wait it out and emphasize hydration. This second round's side effects have been more severe than the first, in some ways, but so far his immune system doesn't seem to have sunk as low -- we'll find out more on Wednesday, when he has a clinic visit for blood counts and chemo (Vincristine).
Charlie's beleaguered body has clearly started sending out distress signals to his appetite. Today, he has asked for spaghetti, watermelon, pizza, French fries, taco cheese, ketchup (it's a vegetable, right?), lettuce, bread, Doritos, a lime popsicle, Saltines (dipped in ketchup), carrots, Spaghettios, salt & pepper (which he poured into his palm and licked off!), orange pop, Sun Chips, string cheese, a taco shell, chicken strips, a lollipop, and, of course, his Hot & Spicy Cheez-Its. Unfortunately, Charlie's version of "eating" mostly entails pushing these foods around his plate and maybe taking a few tentative nibbles, but he has tasted more new foods in one day than ever before. We've spent most of the day catering to his every whim -- he knows we can't refuse him any food he ask for! The tube feedings are going better, too, and we hope to get up to full feedings by tomorrow. Even though he doesn't take in much volume orally, it's reassuring that he asks for food -- that lets us know we're on the right track and not feeding him more than he can tolerate. We would love to have a week of successful feedings before the next round of chemo starts on August 12th.
Charlie isn't the only one who's trying new foods -- Jack got his first taste of rice cereal last night, and knew exactly what to do with it. We've been holding off for a little while because Charlie wanted to help with his first feeding, and he just hasn't been up to it. We figured that feeding Jack could be very therapeutic for Charlie -- he loves to feed us, too, and has gotten very adept at cutting up pancakes and feeding them to Paul in the morning. If Charlie gets his way, Jack will be the plumpest baby around.
Thursday, August 01, 2002 at 011:45 PM (CDT)
Charlie has been feeling just lousy the past two days, with what we think are delayed effects of the Cisplatin, the potent chemo drug he got as an inpatient on July 22nd. As the cells die off, waste products accumulate in the body and can cause extreme fatigue and GI upset. His diarrhea got worse on Wednesday and he was digesting nothing -- we had to give up on getting any calories in and just focused on keeping him hydrated with Pedialyte. The diarrhea seems to have resolved today and he's tolerating half-feedings, with extra water. He is exhausted and spent most of today in bed, at his own pleading. After being awake for an hour or two, he begs for another nap. Poor little guy. His temp. is fine and his labs on Tuesday were okay (although his hemoglobin was trending downward), so we're hoping to wait this out at home.
We're glad that Charlie did feel well enough on Wednesday to snuggle into Daddy's arms and accompany us to Liam's kindergarten graduation, or "flying up" ceremony. Liam has made great strides in his learning this year, despite the upheaval at home, with my bedrest, Jack's premature birth (both distant memories now), and Charlie's cancer treatment. We're so proud of him, and can't believe he's already "flying up" from Children's House to Elementary I. When school resumes in September (only a month away!), he'll be in a mixed classroom of first, second, and third-graders, which should provide him with some interesting challenges. Congratulations, Liam!
Tuesday, July 30, 2002 at 11:57 PM (CDT)
The past two days have illustrated how widely Charlie's moods can swing from one day to the next, for no reason that we can discern yet. He was on top of the world Monday afternoon and evening, despite continued problems with diarrhea and feeding intolerance -- I even saw him run a few steps through the living room, which he hasn't done in weeks. But today he was feeling really cruddy and just wanted to sit on my lap all day -- the tiny-whiny voice was back with a vengeance. He was very anxious about the clinic appointment, though it went well -- the Saran wrap over his EMLA cream worked great again, so the visit was completely painless. He got his Vincristine (chemo drug) and blood work, and we discussed the problems he seems to be having with the Bactrim wreaking havoc with his digestive system. They decided to take him off the Bactrim and use a monthly aerosol medication, delivered by nebulizer, to prevent pneumocystis pneumonia. We hope that will remove one obstacle to keeping him nourished -- he continued to have difficulties with digestion today and spent most of the day on Pedialyte, which just doesn't supply him with the calories he needs to maintain, much less regain his lost weight.
When I was rocking Charlie this afternoon, he declared in a solemn and mournful voice, "Mommy, I'm never going to be four or five." My heart skipped a few beats, until I realized that he was not being prophetic -- this was just the same fatalistic tone with which he daily (if not hourly) laments that things aren't moving at his desired pace -- it's usually, "Daddy is NEVER going to come home from work (or finish mowing the lawn, or push me in the swing"), or "I'm going to have to stay overnight at the hospital FOREVER." So we talked about the fact that we really only had to get through August and September before his birthday would be here, and he decided he could probably wait that long. October will probably be here before we know it.
Sunday, July 28, 2002 at 11:57 PM (CDT)
We actually made it through a weekend with no trips to the hospital or phone calls to the on-call doc! Charlie felt very good on Saturday -- it was the first day since he was diagnosed five weeks ago that he and Liam have had a day just to play together, without Charlie hospitalized and/or feeling miserable. I banished them to their bedroom upstairs, and then eavesdropped via the baby monitor while Liam read Charlie book after book after book -- he has become an outstanding reader this year, and Charlie is always a willing audience. Charlie ventured outside for a little while in the afternoon, and decided to wade around in the pool for a few minutes. When I got out his swim trunks, he declared that he wanted to swim with just his bottom. "Just your bare bottom?" I asked. "NO," he scolded, very indignantly, "my KID bottom -- I'm not a BEAR." He got really mad when I laughed at that -- I tried to explain why it was funny, but he doesn't appreciate the humor in it.
Feedings continue to be a challenge -- Charlie's digestion has slowed down and he rarely has an empty stomach when the next tube feeding time rolls around. His oral eating has dropped down to nothing again. And his Bactrim, the antibiotic he takes on the weekends (prophylaxis against pneumocystis pneumonia) seems to have caused a problem with diarrhea today -- he had the same problem with it three weeks ago, but it hadn't surfaced again until today. I think we'll start adding some yogurt or other source of beneficial bacteria to prevent that next weekend, if the clinic okays it.
I was lucky enough to enjoy dinner and a movie with a very handsome and charming younger man today -- I hope Paul won't be jealous. Liam and I went to see Stuart Little 2 and then dined on Happy Meals at McDonald's (I knew I shouldn't have let him pick the restaurant). It was great to spend a few hours alone with him. To steal a phrase from one of the dads on my g-tube discussion list, I think Liam has been suffering a bit from PADD -- Parental Attention Deficit Disorder, though he never complains about the amount of time we spend taking care of Charlie (and Jack). He has been such a trooper throughout the string of medical crises that seem to keep popping up. He was simply delighted to have a special outing, just for him.
It's back to the clinic Tuesday for chemo and counts -- here's hoping for a quiet Monday!
Friday, July 26, 2002 at 07:53 PM (CDT)
It was another long day at Children's (poor Jack spent five hours cooped up in his carseat), with visits to the oncology clinic for blood tests (counts and electrolytes) and the short-stay unit to meet with the gastroenterologist. We're trying a shorter shaft on Charlie's feeding tube and hoping that will provide a snugger fit to stop leakage from his stoma -- it's two-tenths of a centimeter shorter than the size he has always had, but with the weight he's lost, it might be just right. The GI doc also suggested trying Carafate, a medication that might help heal any ulcerations in his stomach, which could possibly be causing the pain around his MicKey, but after reading about contraindications in patients with kidney failure (like Charlie), we've decided to hold off on that until we can discuss it at his clinic appointment on Tuesday. Carafate's chief side effect is constipation, and we certainly don't need that, with the Vincristine already on board.
Yesterday, when the clinic asked us to come back for another blood draw to check electrolytes, I cringed at the thought of another port access, and more tape over EMLA cream. I mentioned Charlie's tape anxiety, and the nurse said, "Oh, forget about the tape -- you can just put Saran wrap over the EMLA -- it will work fine." We tried it, and PROBLEM SOLVED! Charlie's skin wasn't quite oily enough to hold the Saran wrap in place well, so I sprayed a little Pam cooking spray on it before I applied it to his skin, and it held just fine. Charlie was able to take it off himself at the clinic -- he still cried because he was worried that it would hurt, but I don't think it will take him long to learn that it doesn't. He'll still need an occlusive, adhesive dressing over the port when it needs to be accessed for a few days at a time (i.e., for inpatient chemo or other hospital stays), but the clinic can get by with tiny amounts of tape for short-term access. The tape would be such a small thing to a grown-up, but it's huge to Charlie -- I'm so glad we have a way to avoid a major source of stress. Now, if only he could get used to having his blood pressure taken...
Wednesday, July 24, 2002 at 09:24 PM (CDT)
It has been a mixed day -- Charlie started off feeling pretty good today, and his clinic appointment went relatively well. After the chemo was delivered, we tried a new adhesive remover to take off the tape over his port. The nurse left us alone to play with it for awhile, and then I slowly removed it while Charlie watched "Dumbo" -- what a godsend it is that the clinic rooms feature portable TV/VCR's. He still cried the entire time, but he agreed that it was because he was scared, not because it actually hurt. That may be progress enough for now. It was the shortest clinic appointment yet, at just over 2 1/2 hours.
We continue to have problems with Charlie's MicKey button (feeding tube) and leakage of stomach contents from his stoma. We have an appointment with the gastroenterologist on Friday afternoon, and hope we can find a solution. We suspect it has to do with pressure on his stomach, either from the tumor, or from the severely constipating qualities of one of the chemo drugs. This afternoon brought a repeat of Saturday's stomach discomfort and lethargy, with Charlie curled up on my lap all afternoon (and Daddy's lap now), despite a fairly successful poop this morning (sorry for the graphic details, but these are the little things that make or break Charlie's day!). We're still trying to find the right maintenance dose for the prescribed laxative, but it's becoming clear that if we wait for things to slow down before using it, that's too late to prevent a day of misery.
On the up side, Charlie ate an Oreo this morning at the clinic, for the first time ever! Those who know Charlie well can appreciate what a big deal that is -- two textures in one cookie?! That's a first. At the hospital yesterday, he tried another first -- bread with grape jelly, which he spread on very lovingly. Ordinarily, he wouldn't go near icky, sticky jelly, but he bravely tried a small bite, and even licked the jelly off his table knife -- not the nicest manners, but we'll let it go this time.
Tuesday, July 23, 2002 at 10:35 PM (CDT)
We're home, after kicking off Charlie's second course of chemo with a brief two-day hospital stay. All in all, it went very well -- no vomiting or nausea, and he was in pretty good spirits, though very tired and fairly cranky this afternoon. During the pre-chemo hydration period on Monday morning, Charlie was in a great mood -- he played in the playroom a couple of times and enjoyed wandering around the floor, looking at the fish and seeking out the vending machines. He polished off nearly two small bags of pretzels -- we started him on Megace, an appetite stimulant, a few days ago, and it seems to be kicking in. He finished off a strip of bacon this morning, after a chemo regimen notorious for producing severe vomiting, and even asked for seconds. Maybe cancer will be the best thing that ever happened to his appetitite!
The hardest part of the stay came at the beginning when Charlie's port was accessed, without the numbing cream (EMLA) and tape this time. He screamed hysterically for about three minutes, crying just as hard about the painless cleaning and prep activities as for the needle poke itself. It's hard to say whether that was worse than the hour or two of anxious crying he has been doing while waiting for the numbing cream to take effect. We have some new, less-sticky tape to try over the EMLA now, so maybe that will be the key.
Tomorrow we return to the clinic for his two outpatient drugs, Vincristine and 5FU, and I'll try to post an update after that. Paul has promised me a back rub if I finish up soon, so I'm outta here!
Sunday, July 21, 2002 at 06:02 PM (CDT)
Charlie had a very rough day yesterday, complaining of more stomach pain than usual and begging to be rocked all day, poor guy -- he hardly budged from my arms or the couch. His temp. was slightly elevated but not technically feverish, so we just kept in touch with the on-call oncologist and observed him at home, glad to stay out of the emergency room this time. His digestion ground to a halt yesterday afternoon, and we suspected he might be constipated (a major side effect of the Vincristine he got on Monday). Sure enough, he felt better after things got moving again yesterday evening, and he's having a great day today. He had a brief outing to buddies Calvin & Rosalyn's house for the first time since the cancer was diagnosed, and it felt good to do something so normal.
Charlie enjoyed watching the roofing party this weekend -- Paul's sisters, brother, and dad got together with another neighbor and re-shingled three garages (ours, Heather's, and the neighbor's) on one of the hottest weekends of the summer -- and I thought I was hot, sitting in the rocking chair in the central air with two little sweaty bodies draped over me. We really appreciate everyone's hard work, and it was awfully nice of them to do our garage first! There was a little extra excitement during their lunch break this afternoon -- a building across the street from us that houses a new church had a huge fire, and we had every kind of rescue vehicle imaginable outside our house, and lots of thick smoke. We haven't heard how the fire started, but it looked like there was a church service going on at the time -- it appears to be a total loss, so please remember them in your prayers, too.
Tomorrow we check in for chemo, and are hoping for a short, one-night stay. It's such a luxury to have advance warning for this one -- Charlie is prepared for it and even a little excited about the prospect of opening a special present when we get there. We'll keep the bribes coming, if they work!
Friday, July 19, 2002 at 09:28 PM (CDT)
At his clinic appointment today, Charlie's blood counts were back to the normal range, so he's all set to begin his second three-week course of chemo. We'll start giving him the anti-nausea drug through the night on Sunday and will check in Monday morning for his inpatient drug, Cisplatin. If everything goes well, he'll go home Tuesday and get the other set of chemo drugs (5FU and Vincristine) as an outpatient in the clinic on Wednesday.
Charlie was cheerful and feeling good most of the day, but continues to have such a hard time dealing with removal of the tape that has to cover the EMLA cream, which is used to numb the skin over his port before it's accessed with the needle. The clinic nurses and child life specialist have been so good about trying to minimize his pain and anxiety, but there doesn't seem to be a good solution yet. We need a brilliant chemist to invent a tape that only sticks when we want it to (hint to Paul, Ron, Jim, Bern, Eva, Mark, Roz, Eric, Kofi, Chad, and those of their ilk!). The nurses have tried special adhesive remover, but there's a little bit of skin breakdown on his shoulder, and that just seems to sting. We'll keep working on ideas to make it easier for Charlie.
I promised I'd keep it brief so Paul can get online to play his game and get out of touch with reality for awhile. Thanks for checking in!
Thursday, July 18, 2002 at 08:40 PM (CDT)
I can't believe it's been so long since I've posted an update -- I was working on one yesterday, but a really virulent stomach bug came a-calling unexpectedly last night before I could get it posted. Let's just say that I am now better acquainted with our toilet bowl than I ever hoped to be, after spending five or six hours prostrate on the bathroom linoleum. Paul stayed home from work this morning to let me sleep and recover, but I sent him to work in the afternoon, once Charlie and Jack were down for their naps. Of course, five minutes after he left, they were both up wailing -- Charlie came downstairs in a cold sweat, complaining of stomach pain (well, more than usual), so I vented his g-tube, a handy alternative to vomiting -- I was wishing I had one last night -- and we've gone back to Pedialyte, just trying to keep him well-hydrated until his clinic appointment tomorrow morning. If he does have this stomach bug, at least it's short-lived -- 24 hours later, I'm starting to feel better.
Now for yesterday's belated update: Charlie had his hearing test on Wednesday and passed with flying colors -- one of the chemo drugs he gets can cause hearing loss, so he'll be watched closely for that. It was great to see his old buddy Tricia, his feeding therapist (thanks for the giant Pizza Goldfish -- he ate two at home!).
Cousins Max and Oliver came for a visit yesterday afternoon (with Aunt Robyn and Grandma), and Charlie enjoyed having company, even though it meant sharing his toys. He briefly contemplated trading Jack for Ollie, but decided to stick with Jack for now, although Ollie is pretty irresistible!
Charlie decided to work on some homework while Liam did his -- he folded a bunch of pieces of paper into cards for his Aveda preschool friends, who have sent him some fantastic get well cards. Charlie surprised us by writing his buddy Dalton's name with very little help -- it was the first time I'd seen him try to write any letters, besides a few backwards "C's". I had been worried about how his illness might affect his learning and development, but I guess I can quit that -- on his good days, he seems determined to squeeze in as much as he can.
I'm off to bed early so I can shake the last of this bug. Tomorrow, Charlie has a clinic visit to check his blood counts before starting the next course of chemo on Monday. We'll keep you posted!
Monday, July 15, 2002 at 11:47PM (CDT)
Today, Charlie had his best day since the cancer was diagnosed, almost four weeks ago. On Sunday, he started getting a tiny daily dose of Elavil, an anti-depressant that has proved useful in treating anxiety and promoting sleep in some childhood cancer patients. Last night, he slept the whole night through, without a peep, sob, or whimper -- and the heavens opened up, and I'd swear I heard a choir of angels sing -- it was such a miracle! He woke up feeling like his old self, playing and chattering all morning. He practically bounced into the clinic and had a great time playing in the waiting room. He did have a hard time with all the things that usually set him off -- having his blood pressure taken, being examined by the doc, and having the tape removed from his port dressing -- but, overall, his stress level was much lower. He was dragging by late afternoon, partly because he woke up too early from his nap, complaining of pain around his MicKey again, but most of the day was enjoyable, and we don't take that for granted anymore.
Charlie's chemotherapy schedule has been changed a bit due to staffing problems at the hospital -- he'll start his inpatient chemo on Monday rather than this Friday, and should be able to come home after just one day this time. His blood counts were up enough that they were able to discontinue the G-CSF, so we won't have to learn to do that at home (yet). His tube feedings have been going well and we are slowly working our way back to up his pre-surgery volume. He was more interested in eating today, and asked to stop at the hospital gift shop for gummy worms. How could I say no to that? Of course, he just likes to hold them, and feed them to the rest of us, but it's a start -- sticky foods are the hardest for him to handle.
We're so glad to have Grandma Lewis safe and sound after a scary car accident this afternoon. She had come to help me bring Charlie home yesterday and take care of Jack today, and had just left our house when the car behind her on the interstate was rear-ended by a semi and plowed into her. Her car was totaled, but we're thankful that she's okay and walked away from it with no injuries. It's a good thing she favors big, heavy Grandma cars -- now she's looking for an even bigger, heavier one. We need to keep her safe -- we would be sunk without her!
Sunday, July 14, 2002 at 10:02 PM (CDT)
Charlie is glad to be home again after three more days in the hospital -- he was cut loose for a day until his clinic visit tomorrow, where some decisions will be made about whether to continue the G-CSF at home to stimulate production of white cells -- that would mean we would be doing more IV's, or injecting the drug subcutaneously into his legs, a very daunting prospect. We hope he just won't need it anymore.
Charlie will also get his third dose of Vincristine tomorrow, and that will be the last treatment involved in this first course of chemo. The plummeting -- and then rising -- white count is an indication that his first dose of Cisplatin, the potent inpatient chemo drug given two weeks ago, has done its work (we hope) and its effects are now receding, along with Charlie's hairline. He left the first deposit of blonde hair on his pillow Thursday morning, and it has come out by clumps, fistfuls, and little hair showers ever since -- it's amazing that such a small head can hold so much hair. He doesn't seem to be bothered at all by the aesthetics of the hair loss, but he is annoyed by the constant cascade of baby-fine hair into his eyes, nose, and mouth. We're trying to convince him to let us trim it -- we never did make it to the barber for a pre-chemo haircut, since he was stuck in the hospital. We take the hair loss and low blood counts as positive signs that the chemo has been working its magic, and look forward to hitting the tumor with the second round beginning this Friday.
Saturday, July 13, 2002 at 08:12 PM (CDT)
Charlie and I are sad to miss Great-Oma's 90th birthday celebration in Harmony tomorrow, but we'll be there in spirit! We look forward to celebrating 91 with her next summer. We're also wishing Daddy a happy 35th birthday today (when did HE get so old?!). I'm sure he can think of many ways he'd rather be spending his birthday, but he'll have to take a raw check for now. At least he'll have no need for a mid-life crisis - we've had enough of them, thank you very much!
Charlie's white cell count has begun to climb again, but his ANC is still very low. He is having some more good moments, and played with Daddy for about an hour in the playroom last night. He enjoyed a visit from Liam and cousins Megan and Matthew today. We aren't sure how long this hospital stay will be, but I think he'll get to come home for a bit before he checks in again on Friday to kick off his second three-week course of chemo.
Friday, July 12, 2002 at 10:21 PM (CDT)
Just a very quick update before I topple over into bed -- Charlie was admitted early this morning and seems to be feeling a touch better (though still terribly grumpy) and took a good nap this afternoon. His white blood cell count is extremely low -- an absolute neutrophil count (or ANC, one of the numbers we'll live and die by over the next several months) of less than 200 indicates severe immune suppression, and Charlie's is 12 today (less is NOT more). His primary oncologist, Dr. Messinger, feels that as his white cells plummeted, Charlie's system was simply overwhelmed by the normal bacteria residing in his gut. They're treating him with antibiotics and a growth factor called granulocyte colony stimulating factor (G-CSF) to foster quicker growth of new white cells. His blood, urine, and central line have been cultured to rule out sepsis, but the docs are pretty certain this infection surfaced from within his own body. We are't sure how long he'll need to be hospitalized. This time, he was not at all resistant to returning to Children's -- I think he's starting to realize that going home doesn't make him feel any better, and the hospital is beginning to feel like a safe place. I hope that he and Paul get some much-needed sleep tonight -- if Jack cooperates, I certainly intend to do the same.
Friday, July 12, 2002 at 04:54 AM (CDT)
Charlie just can't get a break. He started vomiting at about 2 o'clock this morning, and spiked an underarm temp. of 102 at 4 a.m., so Paul has headed off to the emergency room, and I'm anxiously awaiting word. Please send some extra healing prayers his way -- we hope it's just a stomach bug, but even that would present such a setback for the little bit of progress we've made with feeding this week. With the central line and his low blood counts this week, any fever is cause for worry. We'll keep you posted.
Thursday, July 11, 2002 at 10:47 PM (CDT)
Well, Charlie's good mood evaporated as quickly as it had appeared -- yesterday, he happily did some fingerpainting, put together Legos, and helped me bake bread, but today he was back to being sad after waking up crying at least seven or eight times last night. He must have gotten desperate toward morning, because he started calling for Liam instead of us, apparently frustrated that Daddy and I couldn't do much for him, aside from rocking or rubbing his back. We're a bit mystified and very frustrated that we can't get to the bottom of his stomach pain and/or anxiety -- we have another oncology clinic appointment tomorrow morning to try to figure out some way to help him. Narcotics slow down his digestion so much that he ends up feeling worse when he's on them.
I think he would feel much better if he could just sleep well at night (as would we -- Paul and I are walking zombies at this point!) When Charlie is well-rested enough to be interested in playing, he doesn't seem to be bothered by pain, but when he's tired, he just seems consumed by misery. But we don't know which comes first -- the pain, anxiety, or sleeplessness, and we can't tell for sure whether the pain actually comes and goes, or whether it's a more constant, low-grade pain that he just copes with better when he's well-rested and active. We're just hoping that we can pinpoint the exact source and nature of the problem soon, and find a way to relieve it effectively. I'm afraid that if the tyrannical whining isn't reined in soon, Charlie will have less to fear from the cancer than from us! We love the little guy, but look forward to seeing him happy again, for all our sakes.
Wednesday, July 10, 2002 at 04:10 PM (CDT)
Charlie is having a great day today and is much more like his old, cheerful self. It's a joy to see his smile surfacing again, though the tiny-whiny voice is always at the ready. He's still prone to falling apart pretty easily, and he could use a servant or two, but things are definitely looking up. He had few complaints of pain around his MicKey (feeding tube) button yesterday, and there seems to be less pressure on it from the direction of the tumor. We're hopeful that means that the tumor is on the run now. One of the Minneapolis oncologists had mentioned last week that we should expect the tumor to actually expand before it starts to shrink, as the tumor cells swell, hemorrhage, and then die off -- when the pain and pressure increased last weekend, we were hoping that pre-shrinkage expansion was the culprit, and now it's looking like that might be the case. It's kind of helpful to have the MicKey there, like a little gauge to tell us what the tumor is doing.
The elemental, pre-digested formula we started on Monday night ran through Charlie a little too quickly, right on out the other end, which was pretty miserable for him. With the decreased pressure on his MicKey, we decided to try some small bolus feedings (those are single, meal-like feedings given over 20 to 30 minutes, rather than a slow, continuous drip), using our old homemade, blenderized formula (a.k.a. "Goo"), and that has gone very well. I never thought I'd be so happy to see (and smell) Charlie's good old Goo again. He has always seemed to tolerate it better than commercial formulas -- I guess he just likes our home cooking. We'll probably still use the feeding pump at night, to deliver a slow bolus or two, especially since Jack still bellies up to the trough twice a night, and feeding Charlie twice a night, on top of pumping milk for Jack and doing Charlie's IV hydration, would certainly put us over the edge -- we're sleep-deprived enough to begin with. It was wonderful to have a near-normal day, or as close as we have ever had to one of those! We hope for a solid week of them before we check in for chemo again next Friday.
Monday, July 08, 2002 at 10:59 PM (CDT)
We spent all day at the oncology clinic today, getting Charlie filled up every which way -- he got his chemo drug, IV fluids for hydration, a blood transfusion to boost his low hemoglobin, and continuous feeds all day, which he tolerated well. He also watched a phenomenal amount of TV -- the clinic has an impressive collection of videos, and I think we watched every one of them by the time they unhooked him at about 5:30 this afternoon. A home health nurse came out tonight to show us how to deliver Charlie's IV fluids in 118 easy steps. It's kind of amazing that they'll let rank amateurs mess around with a kid's central line, especially a kid whose immune system is heading south at full speed. But Paul and I have made a pact to supervise each other with a wary eye as we fumble around with alcohol wipes and heparin flushes in the middle of the night. The home IV hydration should be a very temporary step. We have switched to a special elemental formula for Charlie's tube feedings, which he should be able to digest more quickly than Pediasure -- that might allow us to increase his feeding rate enough to discontinue the IV fluids after a short time. In the meantime, it's a relief to know that we can keep him hydrated. He was feeling much better by the end of the day -- the transfusion perked him up a great deal and he seemed to feel better than he has since this whole ordeal began.
Charlie was feeling chatty on the way home today and seems to sorting things out emotionally. I shudder to think about the memories he's forming. Charlie noticed that his clinic nurse had a bandage on her finger and asked her what happened -- she explained that she had just broken a fingernail. "Well," said Charlie, "when we were reading the Bambi book, my fingernail rippeded off and there was a lot of blood -- Mommy put a Band-Aid on it. You have to be careful." My heart sank to my shoes -- we read that book months ago, but the memory of that little hangnail was so vivid for him -- I can't imagine the kinds of things he's storing away from this experience. Getting this first phase of treatment behind us will help -- once the tumor is reigned in, some of these discomforts and interventions should start to fall away. I see so many happy, healthy-looking bald kids running around the oncology floor and clinic -- someday soon, Charlie will be one of them.
Sunday, July 7 at 11:55 PM (CDT)
Well, we've made it through two full days without returning to the hospital, which feels like quite an accomplishment! Things were looking a little iffy today, though -- we apparently reached Charlie's limit with the continuous feedings early this morning, and his GI tract completely shut down in protest. For about 12 hours, nothing would budge from his stomach, and he was looking pretty dehydrated and lethargic again by early afternoon -- with no fat reserves and a quicker-than-normal respiratory rate, he dehydrates alarmingly fast. Knowing our long experience with Charlie's stubborn gut, the on-call oncologist felt we could probably muddle through until our clinic appointment tomorrow morning and okayed our plan to remove the undigested gunk (sorry, too much information) and re-start him on a slow flow of Pedialyte for four hours. He handled that well, so we switched him back to Pediasure tonight, and are hoping to have better luck tonight at a slightly slower rate. You wouldn't think that a teaspoon per hour could make much difference, but some adult g-tubers I know from online discussion groups have confirmed that even that small an increase can make the difference between comfortable feedings and unbearable nausea.
Our dilemma is that we can't keep Charlie adequately hydrated or nourished at the slower rate, so we might have to set him up with IV hydration or nutrition at home until the tumor releases its stranglehold on his poor stomach. His primary oncologist had mentioned that possibility last week, and we'll discuss it at his clinic appointment. He'll have his outpatient chemo drug and probably a blood transfusion tomorrow, which should boost his low hemoglobin and increase his energy a bit.
Liam made it home from Grandma's and Grandpa's, looking very well-fed. He expects ice cream for breakfast, lunch, and dinner now -- I guess he'll have to go through the same re-training program that Jack experienced this week, post-Grandma. His year-round school program starts up again tomorrow for the last four weeks of the academic year. Liam has had the most wonderful teacher this year -- I hope he can make the most of his last month with the inimitable Mr. C. I'm already maneuvering to get Charlie into his classroom when it's his turn for kindergarten.
In a refreshing brush with normal life, I actually made it to the mall on Saturday to get NEW PICTURES developed for Charlie's album -- check them out!
Friday, July 05, 2002 at 09:46 PM (CDT)
Charlie is home, again! This time, I think he stands a pretty good chance of staying here, until it's time to check in for his second round of inpatient chemo in two weeks. The CT scan finally got done and showed that the pancreatitis has resolved. As we suspected, the tumor is exerting pressure on his stomach and causing pain during tube feedings. So he has a new accessory, and Paul has a cool new gadget to play with -- a nifty little continuous feeding pump, about the size of a really thick sandwich, that can run on a battery and comes with its own miniature backpack, so Charlie can be fully mobile. Within a few days, we hope to work our way up to full feedings and start beefing him up before the resection surgery in a few months. Charlie is helping by eating like a little chow hound this evening -- he polished off three pieces of pepperoni, half a bag of pretzels, a pickle, some snip candy, and, of course, a good number of Hot & Spicy Cheez-Its.
Charlie is glad to be home again and seems truly ready to be home this time. He is having a hard time adjusting to sleeping alone, though, after having constant company for the past two weeks (it seems impossible that it's only been two weeks -- it already feels longer than his 132-day NICU stay). For tonight, we're letting him bring his oxygen and his pump to bed with us, but we'll be especially glad to see Liam tomorrow when he returns from Grandma and Grandpa's -- Charlie will get his roommate back, and we'll only have Jack and his cradle crowding our tiny bedroom again. The hospitalizations (and all the pain and procedures accompanying them) have taken a real toll on Charlie's emotional state -- his confidence seems shattered and he is in tears much of the time, which is so unlike the bouncy, chatty kid everyone knows. His oncologist assures us that this first phase of treatment is the hardest, and things will get better before very long. We look forward to reading all of the guestbook entries to Charlie -- he will certainly feel the love and good wishes in all of your messages!
Thursday, July 04, 2002 at 10:00 PM (CDT)
I packed an overnight bag for Charlie's clinic visit yesterday because I was certain he would be re-admitted to the hospital and, unfortunately, I was right. He had dropped another pound since leaving the hospital on Monday (down to 23), and was looking ghostly thin and dehydrated. I took along a photo that I had snapped just two weeks ago, on the day of his admission for the biopsy surgery, showing Charlie sitting on his hospital bed, looking perfectly healthy, if not exactly plump. I showed it to every medical person I came across, for contrast -- I didn't want them to look at Charlie's checkered past as an ex-preemie with feeding problems and assume that sunken eyes and jutting vertebrae were normal for him. Blood tests showed that Charlie's pancreatic enzymes had fallen by half (a good thing), so we felt pretty sure that the pain he was feeling as we tried to increase his feedings was from the tumor pressing against his stomach, especially at his g-tube site. His oncologist admitted him to Children's-Minneapolis again, with the plan of doing a CT scan and starting continuous (drip) feedings with a feeding pump, unless the CT showed a reason not to do so. Paul scrambled to the clinic after putting in a two-hour workday (and I'm pretty sure one of those hours was lunch), and we hurried over to Minneapolis to meet with the gastroenterologist by mid-afternoon and get the ball rolling.
But through a series of miscommunications and screw-ups I won't go into here, the CT scan has been scheduled and cancelled three times, and now won't happen until tomorrow, July 5th. By some frustrating hospital logic, a child who was admitted because he's emaciated was held with NO feedings for another day and a half. Finally, some drip feedings were started this afternoon, at the agonizing rate of 10 ccs (1/3 ounce) per hour. The gastroenterologist never did show up -- our own GI doc came by this afternoon and will put in his two cents' worth. After the past two days, I'm afraid Paul and I are at risk of being labeled "difficult parents." Maybe we should just have some T-shirts printed up.
On the up side, Charlie has been flooded with IV fluids and at least looks a little better. He has had some very sweet nurses who have struggled valiantly to get answers for us. The oncology floor is swamped with some urgent cases right now, and we're grateful Charlie's is not one of them -- there are some situations where it's good to be relatively low on the priority list. His oncologist assures me that they won't let him starve before my eyes. He's hopeful that the continuous feedings can progress and Charlie will be ready to go home soon. We'll keep you posted. Happy 4th of July! Paul and Charlie should be enjoying some fireworks from his hospital room window right now.
Tuesday, July 02, 2002 at 10:33 PM (CDT)
Well, we got our quiet day at home, aside from Jack uncharacteristically squalling for attention -- after two weeks of Grandma's tender ministrations, he seems to be under the impression that he's entitled to constant coddling, and we'll have to set him straight on his place in the pecking order right away. Charlie is still very subdued and sad much of the time. He has lost nearly three pounds (and he didn't have an ounce to spare to begin with) and is looking disturbingly gaunt at just over 24 pounds -- Jack will probably outweigh him by his first birthday. Between being NPO for tests and surgery, recovery, illness, chemo, pancreatitis, and pain from the tumor pressing against his stomach, he has had precious little nourishment for the past two weeks. I'm much more concerned about him starving before our eyes than I am about the cancer. At our clinic visit tomorrow, I hope to set a plan to get some weight back on to his bony frame, and quickly. We might have to temporarily put him on continuous feeds via a feeding pump (mostly at night, while he's sleeping) to get enough calories into him without causing stomach pain, until the tumor shrinks enough to ease the pressure. We're hoping to come up with some answers tomorrow.
Monday, July 01, 2002 at 06:32 PM (CDT)
Charlie is home! After a grueling 12 days in the hospital(s), he is happily settling in. He was feeling a little vulnerable at first, so we rocked for a few minutes, and then I put him to work, feeding his very hungry fish. I think he just needed a sense of purpose, because he cheered right up after doing a few little chores. We'll have to be careful not to treat him like an invalid. He's getting accustomed to maneuvering around on his 50-foot oxygen tether, and scrambled up the stairs to help Daddy put together the Lego train set.
Charlie's pancreas is still acting up, and the marker enzymes in his blood continue to rise, but the doctors allowed him to come home with very cautious feeding. If the levels are still up when he visits the oncology clinic on Wednesday, they'll do another CT scan -- it may be that the tumor is compressing his pancreas and causing the inflammation. If he isn't able to tolerate feedings, he'll have to be re-admitted to receive intravenous nutrition, something we really hope to avoid. Charlie came home with a whole new set of medications and instruction, but everything's manageable so far.
We received a complete "road map" for his first course of chemo and tests today. In addition to the inpatient chemo drugs (Cisplatin, Vincristine, and 5FU, for those of you who are keeping score), he will also receive one chemo drug each week (Vincristine) as an outpatient. In the next week or two, we can expect his immune system to more or less shut down, and with the constant influx of chemo drugs, his immunity will be seriously compromised for the next six to eight months. That's the scary part. The nurses really put the fear of God in us, detailing exactly how paranoid we need to be. I don't know how we'll get through this without turning Charlie into a raging hypochondriac, but his future depends on us acting like overprotective, overwrought parents.
Charlie was very glad to see Liam & Jack return home with Grandma & Grandpa, as were we -- Jack looks (and feels) five pounds rounder, and Liam had a ball, especially with Grandpa up at the cabin on Gull Lake. He had such a good time that he turned right around and went back home with them until school resumes on Monday, ready to pack a lot of summer vacation into one week. Charlie is a little jealous, but declared that three-year-olds don't go to Grandma's and Granpa's by themselves. He expects to go when he's six -- I think that's a promise we'll be happy to keep.
We're hoping for a quiet day at home tomorrow before returning to the oncology clinic on Wednesday -- we'll keep you posted!
Sunday, June 30, 2002 at 09:14 PM (CDT)
Charlie is still cooling his heels in the hospital, very dismayed at being incarcerated another day. Blood tests this morning showed that the markers for pancreatitis were still elevated, but he was tolerating small amounts of Pedialyte this afternoon, and we're hoping he can advance to clear fluids tomorrow. He continued to be extremely cranky all morning, but perked up later this afternoon and even ventured a smile or two in the playroom, where he cheated shamelessly at board games with Daddy and me.
Charlie received the second set of chemo drugs at noon, and seemed to tolerate them well. He did have a few gagging episodes this afternoon and evening, but we're not sure whether that had to do with the Pedialyte or the chemo. Tomorrow's labs should tell us whether the pancreatitis is resolving on its own or whether more testing and treatment is needed. I'm heading back to the hospital to relieve Paul -- we're hoping this might be our last night there, until the next round of chemo in three weeks.
Saturday, June 29, 2002 at 11:01 AM (CDT)
One of the gastroenterologists came around yesterday afternoon and offered a different explanation for Charlie's stomach pain -- she suspects pancreatitis, inflammation of the pancreas as a result of manipulation during the biopsy surgery. Some of his labs pointed in that direction, and that could also explain Charlie's fever (which is now gone), night sweats, and even some of the anxiety he's been feeling. The treatment is simply to leave his g-tube vented and skip all feedings for a couple more days to allow his pancreas to return to its senses. We hope that will do the trick. Once again, we feel lucky to have the g-tube -- without it, he'd need to have a nasogastric tube threaded through his nose, a feeling he probably remembers all too well from his babyhood.
Charlie is still miserable in the hospital and keeps begging to come home. It's hard for us to sort out his pain symptoms from his homesickness and stress. We really hope they'll spring him tomorrow evening if he tolerates the second set of chemo drugs well-- home is what he really needs, even though we can't supply him with heavy narcotics there. I think his own bed will be the best narcotic. I know I was happy to see mine last night -- I was on the verge of becoming psychotic from sleep deprivation, and was glad to leave Charlie in Paul's hands last night and come home for a blissful 8 hours of uninterrupted sleep. It's the first time I've had that since before Jack was born in January -- maybe we should send the kids away more often! Liam and Jack are with Grandma & Grandpa Lewis for the weekend. I was a little worried that I might never see Jack again, but his sudden need to eat every 2 hours and 15 minutes, on the dot, assures me that Grandma will be glad to return him.
I'm supposed to be tackling dust bunnies right now, but a mid-morning nap sounds like a better idea... we'll keep you posted after Charlie's second set of chemo drugs tomorrow.
Friday, June 28, 2002 at 03:24 PM (CDT)
The first shot in Charlie's personal war on cancer was fired today. From information gathered from the biopsy and other testing, the oncologists have concluded that it is Stage III Hepatoblastoma. Although that sounds rather dire, this cancer is staged differently from others. The "Stage III" label refers to the cancer's pre-surgical spread within the liver -- it means that three quadrants of his liver are invaded. After the tumor is shrunk and resection is done, the cancer is re-staged according to the success of the surgery, and that's the label that will be more crucial to Charlie's prognosis.
The battle strategy: four rounds of chemotherapy, three weeks apart, followed by surgery to resect the tumor, and then two more rounds of chemotherapy to obliterate any lingering cells. After we reviewed the treatment plan with his oncologist and signed all the necessary consent forms allowing them to flood his scrawny body with a lethal cocktail, Charlie received his first chemo drug, Cisplatin, at 1 p.m. Treatment actually started at midnight with a dizzying array of pre-chemo drugs and IV fluids to help mitigate the toxic effects of the chemo drugs (they affect all rapidly dividing cells within the body, including bone marrow, the lining of the stomach and mouth, and, of course, hair). Charlie is currently in the throes of what is lovingly referred to on the oncology floor as the "Decadron Crabbies," named for the steroid used to prevent nausea. Extreme irritability is a common side effect -- always a quality to be cherished in a three-year-old, especially one who is in pain and ticked off at hospital life to begin with. Charlie has done nothing today to ingratiate himself to his poor nurses. I'm just glad Paul is well again and able to share the joy.
Treatment began not a moment too soon, as Charlie has been experiencing more abdominal pain as the tumor exerts pressure on his stomach and other organs. He had night sweats (a hallmark of the cancer) for the first time last night, and feels just lousy today. We may not see any actual shrinkage of the tumor for three to six weeks, but the oncologist feels that Charlie's pain will be relieved with the first round of chemo. We certainly hope so.
Charlie will receive two more chemo drugs (Vincristine and 5-Fluorouracil) on Sunday, and we hope he'll be able to go home Sunday or Monday. He'll be seen at the St. Paul Children's oncology clinic for tests each week to monitor his blood counts and check levels of alpha-fetoprotein (AFP) in his blood. An early, dramatic decline in AFP levels will indicate a good prognosis and tell us that the tumor is on the run. We can also expect his white blood cells and platelets to plummet to very dangerous levels about two weeks following chemo, until his bone marrow has a chance to re-group. The prospect of trying to keep Charlie infection-free worries me more than anything.
I'd better get back upstairs to give Daddy a break from Charlie's misery. Thank you for all of the encouraging words, prayers, and help we're receiving, once again. You all mean the world to us.
P.S. Thanks for delivering Antarctica, Chris! I knew it wouldn't be long before we got them on board.
Wednesday, June 26, 2002 at 01:23 PM (CDT)
Well, Paul said it -- one moment, Charlie was sitting on his hospital bed in St. Paul, chatting away and trying to fit a Hot & Spicy Cheez-It through the vent in his oxygen mask, awaiting reams of discharge orders. Two hours later, he was sitting on our couch, spiking a high fever, looking miserable, and lamenting in a very tiny voice, "Mommy, I'm very tired of being myself." The oncology triage nurse said, "It's a no-brainer -- any kid with a central line and a fever needs to be seen in the ER," and our prospect of having two days out of the hospital to re-group before starting chemo evaporated. We wondered how many times we would be making this trip, without the luxury of Grandma installed as a live-in nanny.
By the time the 37th ER staff person wandered in and asked, "Does your child have any health problems?", I wanted to shout, "Do you mean, OTHER than the extreme prematurity, bronchopulmonary dysplasia, severe reflux, fundoplication, gastrostomy, nephrocalcinosis, liver cancer, biopsy surgery, central line, and raging fever?"
Ultimately, the miscommunications were sorted out and Charlie got his bed in oncology a couple of days early. After a nightmarish few hours trying to duplicate Charlie's St. Paul orders in Minneapolis, I dropped into bed next to a burning hot Charlie at 3:30 a.m. and slept about 10 minutes between vital sign checks and Charlie's plaintive sobs. Meanwhile, Paul was at home, incubating a nasty stomach bug and is completely flattened today. The sad thing is that I'd swear he's the lucky one.
We haven't gotten to the bottom of Charlie's fever yet -- he's on antibiotics and his port has been cultured, but it might just be a random bug. Either way, it looks as if chemo can go ahead on Friday, which is a great relief.
I've got to get back to the hospital -- just ran home for to take a quick shower and pack up supplies while Grandpa and Auntie Header sit with Charlie. I'll post more about Charlie's condition as soon as I figure out where they keep the computers in Minneapolis. Thanks for the prayers and words of encouragement! We couldn't get through days like this past one without them.
Wednesday, June 26, 2002 at 12:57 AM (CDT)
Charlie's home! Oh wait, nevermind.
In what is sure to be a taste of things to come, we triumphantly brought Charlie home Tuesday afternoon only to have our hopes dashed in just a couple hours. He was happy to get out of the hospital and see his brothers. But within two hours of being home, he started spiking a fever and when it hit 102, we called the oncologist and were told to head into the emergency room - in Minneapolis. So we dutifully packed up Charlie and ran off to Mpls where they have absolutely no knowledge of Charlie, his history or even any of his medical records. Thus began a four hour saga of telling and retelling everyone who popped into our little room in the emergency dept. After some labs and X-rays, Charlie was admitted to Children's hospital in Minneapolis (room 8123) and started on a round of antibiotics.
So life goes on. Thank you again everyone for your continued prayers and support!
-Paul
P.S. Diane, I plan on being at staff meeting later this morning. Here are my points to bring up:
1 - Will I ever work a 40hr week again???
2 - How Bern tortures nurses and spoils children with one visit :)
Monday, June 24, 2002 at 10:31 PM (CDT)
Charlie continued to struggle with post-op pain today and was very anxious about movement of any kind. The hospital was ready to send him home today, but his pain level seemed unacceptable to me, so he'll stay one more night and come home tomorrow, if all goes well. After another sad day, he did perk up a bit this evening when Daddy and Liam came around. He bravely made the long, slow trek down the hall to the playroom, put together a few puzzles, and was very glad to see his hospital bed again. His mood improved signicantly after he finally pooped (anyone out there who has had major surgery can appreciate that milestone!).
The supplemental oxygen has greatly improved Charlie's color and should really boost his recovery and strength. He will have to get used to life on a leash for awhile -- he'll have 50 feet of tubing, which should get him to anywhere he needs to go in our little house. I anticipate spending a large portion of my day unwinding him, and trying to prevent Jack from being strangled (accidentally, of course).
Paul and I had a special dinner with Liam last night -- he needed a little coddling before we talked with him about Charlie's treatment and what to expect next. I'm looking forward to spending some time with Jack for a couple of days, if I can pry him out of my mom's hands. It has given me great peace of mind not to have to worry about his care. He has certainly never been cleaner -- I think Jack has had more baths in the past five days than in his whole life up to that point. Five days? It's hard to believe that our lives have changed so drastically in such a short time.
Sunday, June 23, 2002 at 06:36 PM (CDT)
Charlie is feeling a little better today, but is still very sore and droopy. His pulmonologist came by and put him on some oxygen and new nebulizer medication to get his sats up -- they were hovering between 90 and 85, which certainly contributed to his fatigue. His pulmonologist feels that the tumor is probably pushing up on his diaphragm and making it hard for him to take good breaths. He has taken care of Charlie since he was in the NICU and will be very proactive in keeping his lungs in the best possible health, which will be key to fighting the cancer. We promised him that we'll do our part by putting Charlie in a virtual Zip Loc baggie -- there will be no play groups, preschool, State Fair (sorry, Kiehnes), or other bug-sharing fests for him for many months, I'm afraid.
We've resumed Charlie's tube feedings, and he seems to be tolerating them so far. I'd really like to fatten him up in the months before his resection surgery, especially seeing the toll that the biopsy surgery has taken on him. With exquisitely bad timing, we had been attempting to partially wean Charlie from his daytime tube feedings when this popped up, so his nourishment had been on the iffy side for several weeks. We had been pleased that he hadn't lost any weight, but realize now that the growing tumor was probably keeping his weight up while the rest of his body thinned out a little bit.
I think Charlie will be ready to come home Tuesday or Wednesday -- we look forward to having him home for a couple of days before he checks in for chemo on Friday.
I'm heading back to hospital to relieve Paul again -- the one good thing about this hospital stay for Charlie is that he has gotten to spend lots of one-on-one time with Daddy, his favorite person in all the world. That, and he's gotten to watch all the Blue's Clues episodes his eyeballs can take in. He can't believe his good fortune.
Saturday, June 22, 2002
Charlie was a pretty sad little guy today as he recovered from yesterday’s surgery – it’s so hard to see him struggle with pain. The nurses are doing their best to keep him comfortable with morphine and Tylenol, but one of their favorite post-surgical drugs is off-limits for Charlie because of his mild kidney failure. It’s so hard for him to understand why his body hurts, though he does know that it has something to do with the five-inch gash across his abdomen and the plastic device sticking out near his collarbone. Charlie did start to perk up a bit in the afternoon, and looked much more comfortable this evening when I left him in Daddy’s hands for the night. Charlie has managed to keep his sense of humor, though – this morning, as he was drifting in and out of his narcotic stupor, he confided, “Mommy, the doctors took five babies out of my tummy. Just kidding -- there was only one baby in there.” I hope he’s not starting to feel maternal toward that tumor, because we’re NOT keeping it.
One of the oncologists stopped in this afternoon to tell us that the initial news from the pathologists confirms the cancer is hepatoblastoma (relatively good news, as the other possibilities carry much poorer prognoses), and the cell type is not anaplastic (also good news, as that variant does not respond well to chemotherapy.) Once the full pathology report is available, the oncologists will formulate the inpatient chemo regimen, and Round I will begin this Friday, June 28th, at Children’s in Minneapolis, so we’ll find out what life is like on the other side of the river. I was relieved to hear that the chemo is scheduled over weekends, give or take a day or two on either side, which will make it so much easier for us to ensure that Charlie is never alone at the hospital. The oncologists are thrilled that Charlie already has a g-tube – they’re using tube feedings nowadays in children to keep them well-nourished during treatment. He assured us that this type of tumor is usually very responsive to chemotherapy and that it has not metastasized, according to all the evidence they’ve seen. He told us a bit more about what to expect during chemo, and encouraged us to play the pity card whenever possible (“Call up Krispy Kreme, shed a few tears, and say, ‘My child has a tumor,’ and they’ll send over a truckload of free donuts for him.” Charlie’s not into donuts, but we could hit up the Sunshine company for some Hot & Spicy Cheez-Its.)
Today was the hardest one for me so far. I ran into Charlie’s wonderful primary NICU nurse, Anne, in the cafeteria and lost it for the first time, after fighting back the tears for four days. Seeing Charlie in pain (again) hit home to us just how much that frail-looking (but quite sturdy) little body is going to suffer over the coming months. This will be hard on all of us, but Charlie is the one who will really be bearing this burden. One of his nurses came by with their pain scale chart, a row of faces ranging from happy to very sad, and asked Charlie to point to the one that showed how he was feeling. Wincing from post-op pain, Charlie pointed to the happy face and the nurse said, “Well, he obviously doesn’t understand this.” I replied that he is just an optimistic kid. I hope that spirit will carry him through the coming ordeal. He should have two days at home after he recovers from the surgery, and then it’s back to the battle.
Friday, June 21, 2002 at 09:40 PM (CDT)
Charlie has cleared his first hurdle and is resting pretty comfortably after today's surgery. Charlie's surgeon told us this morning that last night's MRA showed that the tumor was too close to the hepatic blood vessels to safely remove yet, so he did a biopsy and installed a port-a-cath, kind of a semi-permanent IV line near Charlie's collarbone to deliver medication and draw blood from (no more pokes, we hope!). As soon as the pathologists identify the cell type and a chemotherapy plan can be made, Charlie will begin chemo to reduce the tumor so it can be removed in a few months. This might allow more of his liver to be spared -- removal at this time would have left Charlie with about one-fourth of his liver, which is enough for him to get by on, but why skimp?
Charlie had a rough night last night after the MRA, running a pretty high fever, with diarrhea and vomiting. We're not sure whether it was a response to the contrast dye from the MRA, side effects of the tumor, or just a random bug with very bad timing, but we were relieved that surgery was able to proceed as scheduled. He was in surgery for nearly four hours and went to the PICU for monitoring, but was able to move back to his regular room after a few hours. I'm home to take a quick shower and give Liam and Jack some quick squeezes while Paul stays with Charlie. We'll keep everyone posted as he recovers from the surgery and gets ready for the next hurdle. We can't thank you enough for all the prayers, encouraging words, and love you've sent our way.
Thursday, June 20, 2002 at 10:04 PM (CDT)
Hi all, Paul here doing my best to imitate Terese's prose while she is sleeping over with Charlie at the hospital.
Charlie had his MRA testing tonight, and came through just fine. He was heavily sedated for the testing, and woke up in a dream-like state that some of the Carleton folks might remember me being in every now and then. Verrrry loopy and silly.
Surgery is scheduled for tomorrow (6/21, solstice day - I'm going to miss the sun worshiping festivities at Aveda) for 11:45am. We should know fairly soon after the procedure is started whether the tumor can be resected or chemotherapy is needed before resection. We will update the site after the surgery.
Thank you everyone for your very kind emails and notes. I believe we have people on every continent but Antartica praying for Charlie :) Love to all, and sorry to miss the family reunion this weekend...
Paul, Terese, Liam, Charlie and Jack
Wednesday, June 19, 2002 at 09:46 PM (CDT)
The fun never ends at the Kiehne household! Today, Charlie was diagnosed with liver cancer. Last Wednesday, I noticed an ominous mass in his abdomen while Paul was getting him ready for bed, and a visit to Charlie's surgeon pointed toward a possible obstruction in his right kidney, which was damaged by the heavy diuretics he needed during his NICU stay.
But an ultrasound and CT scan today showed a large tumor in his liver, most likely a hepatoblastoma. The tumor takes up most of the right lobe of his liver, but the left lobe looks okay. The good news: a CT scan showed no spread to the lungs or lymph nodes as yet, and the cancer is thought be Stage II. This type of cancer rarely spreads to the bones. When I met with the oncologist this afternoon, the initial plan was to do a biopsy and central line tomorrow or Friday, followed by a several months of chemotherapy, then surgery to resect the tumor, and then more chemo. But after he and Charlie's surgeon took a second look at the CT scan and labs, the oncologist called back with a change of plan -- they'll do an MRA (an MRI of the abdomen) tomorrow to look at blood vessels, and will resect (remove) the entire tumor on Friday, if all goes well, and chemotherapy will follow. The chemo will be especially tricky for Charlie, since some of the drugs of choice are toxic to the kidneys, but the oncologist is working with his nephrologist on that already.
I can't say I was completely surprised to hear the diagnosis. After a couple of sleepless nights and a few too many Google searches on painless abdominal masses in children, it's almost a relief to finally know what's going on. Charlie is feeling absolutely fine and glad to be home, a bit traumatized by the blood draw, IV, CT scan, and long day at the hospital, but showing no outward signs of the cancer, aside from the big bump in his tummy. He's a little bummed that the smiley face I drew around it to track its size and location got rubbed off during the ultrasound, but we can always draw a new one.
I know that some very difficult days lie ahead -- it will be hard to see Charlie go from looking so well to feeling lousy from surgery and chemo and whatever else lurks out there, but we have a great deal of confidence that he will beat this. After all that he's already been through, Charlie just seems bulletproof to me -- I envision him walking through tornadoes unscathed. As he told me this afternoon, "I'm a tough guy, Mom -- as tough as a buffalo." Let's hope so.
We'll appreciate any prayers you can send Charlie's way. Please keep Liam in your thoughts, too -- Jack is happily oblivious!
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