Changes large and small
The trauma we've sustained surrounding Christopher's illness and death has had effects we couldn't predict. Making decisions has become an enormous effort. I have easily spent over 30 minutes in the past 6 months standing at grocery shelves, staring at the item I need, but completely frozen, unable to choose from among the different brands and sizes. Aside from the changing produce of the seasons, our diets are pretty stagnant for this reason. I used to make decisions, large and small ones, on my own without too much input. Now, I feel like I don't always think clearly enough, and feel much better when someone can comment on my thoughts before I make a choice. It's a little immobilizing for such an independent spirit but at the same time, I'm just glad to have the choice made, whatever it is about, and move on.
We're definitely doing better compared to July/early August. We're consistently going to the Y on Tuesdays and Fridays, and feeling physically stronger, which seems to reenforce the rest of our beings. Meaghan stays in the child care center, then we all swim together for awhile, and go down the 7-turn waterslide till we're dizzy. Last night at the Y we had a big-time small-world moment. The pilot who took us flying the weekend after Father's Day was at the child care center when we dropped off Meaghan. Turns out his wife works in the center from time to time (I've known her since we first moved here) and their little 13-month-old boy was there last night. As it happens, if you described Christopher you could easily be describing this little guy; he was captivating. Christopher's legacy includes parents holding their children just a little tighter. -K
on this day in history
2 years ago today we moved into our house here in Spokane Valley. Christopher was 3 months + 3 days old. Meaghan was 2 1/2 years old. We cooked frozen pizzas for the mover dudes and remember using something odd, like a wad of packing paper or something, to pull them from the oven. Meaghan took a nap in her new room on her mattress on the floor. It was quite hot, at least 90. One of the movers forgot his baseball hat in our basement.
All the literature says that the 6-month mark is one of the hardest, along with the 2-year mark. We can agree. In just the past few days David and I seem to finally be climbing out of what was about a 3-week-long trough of pretty severe times. But I think we are beginning to climb out.
The remodel at the pharmacy is well underway, with framing on the new retail space taking shape each passing day. Cabinet makers in the area are overwhelmed with business so they can afford to upcharge outrageously; our general contractor is canvassing another 10 prospects in the next few days to hopefully find one who is not gouging in their bid while still able to stay on schedule. Months ago, when we were in the initial estimate phase, cabinetry wasn't the booming concern it is at this point in the season. The retail side should be ready in mid-September, when we'll get started on the storage side. The whole project is scheduled to be complete before Thanksgiving.
There's a new TCF (the Compassionate Friends) chapter starting up in Spokane. We're going to visit for a meeting or 2 to see if it's a good fit for us. The groups are all folks who have lost a child (or nephew, or brother or sister, etc) of any age for any reason. The groups are unique in that they are not run by an "expert", although community experts are sometimes brought in for special forums, they are run by the parents themselves. There is a national charter that dictates the boundaries of the discussions. We haven't seen the charter but understand on good authority that it governs the group from making side-chat or giving advice or "cross talking" while someone has the floor. It's simply a group of truly understanding folk who have actually "been there", listening to each other. I'm looking forward to the first meeting and seeing how it develops.
Otherwise, things here are about the same. Some good days, lots of gray days. Most days we're just about functional, but that's about all we can ask sometimes. We're working hard at getting through. Christopher was a man on the scene in our family and he has left an unimaginable hole in it. -K
Made it through...
...Christo's birthday and Mother's Day. (Lots of my nightly journal entries begin with "Made it through...") I have to say that there's nothing I would change; I think we had about as good a weekend as we could have designed. I attended the annual "Mothers who mourn" service at Manito Pres, the church where I was, actually, baptized. It was contemplative, shareful and prayerful; a good time for me to simply be "alone" and focus on Christopher and all the thoughts and feelings that well up surrounding his birthday.
We positioned the "Christopher stone" - a large stone engraved with his name that the folks at the pharmacy presented to us months ago - in a part of the garden where we can see it from both the deck and the kitchen window. This little pocket of space is taking shape, with a birdbath and some new plants, and Christopher's great-auntie Norma made some stepping stones that will find a home there too.
David's folks took us all to a Children's theater production of Beauty and the Beast on Sunday afternoon. Meaghan was enchanted, and enchanting. My favorite part of the show was watching Meaghan watch Belle and the Beast waltz.
I didn't remember that the Beast was actually killed, only to be brought back to life when Belle professes her love for him. We were surprised that Meaghan was so tuned-in to the story that she followed the scene quite clearly. When it happened, she fell apart, first saying "I don't want to cry", then "I don't want him to die." This got me crying, too. David pulled her onto his lap for the rest of show. Afterward she and I went to Belle and the Prince for autographs, and - in a horribly poor-parenting moment - I told the Prince, in what seemed the most benevolent friendly chatty way I could have managed, that Meaghan had cried when he died. Meaghan was instantly and profoundly embarrassed and was overcome with sobs and "why did you say that?!," over and over. I suddenly realized that I had breached her confidence - a moment and feeling etched eternally I swear. She and I wobbled to a nearby seat and sat trying to pull ourselves together. I told her I had also cried during the scene, which immediately captured her attention and she studied my face. I told her that it had made me think of Christopher, and through her sobs she quickly replied - almost like a confession she couldn't share before - "that was what I was thinking about too." As hard as it was to go through it, I think both Meaghan and I have an experience and distinct memory we can draw on later to navigate other moments we will surely have. The rest of our party had moved toward the door (wondering where we'd gone) while Meaghan and I sat, not far from a rather perplexed Prince, nuzzling and taking deep breaths.
-K
Can't believe it's May already
We took Meaghan to Disneyland the week of Easter. Weather was perfect: high 70s & sunny all week. We did and saw just about everything, and the better things over and over again. We kept count, because that's just who we are, and over the course of the week, Meaghan did the Winnie the Pooh ride eleven times. Yowsa. After about the 6th time I started to plug my ears - it was pretty loud, even for a kiddo ride. She also loved the teacups, Peter Pan, and the Jellyfish at California Adventure!
The nature of Disneyland -- hurry up and wait -- kept us quite mentally active and constantly thinking of where to go and what to do next. It was a distinct break from the routine of regular life, and indeed the work of grieving. Until the last couple days we only pined that Christopher could be there to see and do it all with us. But the last couple days really pressed on David and I, and by the time we were on the bus to the airport, overhearing a sweet family with two young boys, I was edgy and raw. One boy in particular had a respectable belly laugh - not quite as robust or bubbly as Christopher's, but it shook us both up. Without any tissues, I just rained and blubbered all down my sleeves and by the time we got to the airport I was ready to have a shower. To the outsider, I must have seemed really sad to leave Disneyland.
One of Meaghan's fish died last week. They've done pretty well till now. We set up the tank (about 7-8 gallons) in early February, and have had 6 fish for nearly all that time. The poor thing went pretty fast: in about 70 minutes it went from drifting sort of off-balance along the bottom to being lodged like a torpedo between a plant and one of the corners. Both Meaghan and I were pretty distraught for a short time. Then for a week it floated in a cup in the garage, waiting for us to bury it ("burial at sea" didn't seem appropriate, considering). It got pretty smelly. So finally, last Sunday, we had a little burial in the yard, and Meaghan really took it hard. When it first died she was upset, but soon forgot. I think the finality of laying it in the ground and covering it with soil and rocks was pretty jarring for her. I can relate.
Christopher's birthday is Saturday and we have been discussing how to recognize the date. We both feel numb, unsure how to appropriately and sufficiently do this, and completely overwhelmed by the responsibility it seems to carry. We feel like it's got to be something wonderful and meaningful etc, and fielding questions about what we're going to do heightens that sense. We've got some ideas, and a plan somewhat roughed out. We'll likely plant some special items in a certain spot of the yard, and I've been thinking about donating some new toys and activities to the onc ward at Sacred Heart. But as so much of this process has taught us, we sometimes don't know the right course of action until it is upon us. I think we need to trust that, as with navigation, you can have some waypoints along the journey, but you can't be completely certain of the shoreline until you can bring it into tighter focus.
One latest challenge with my grief work has to do with giving over my son, to never again hold him in the way that I perceive is distinctly, supremely maternal, that only I can provide. I have been trying to visualize God as the best, most loving caregiver of all. A bereaved parent we know suggests that he has felt great comfort in letting go control - really letting go, deeply and completely - and resting in knowing that God has all things in his care. I think this doesn't mean he prevents injury or illness or death or free will, but that ultimately, he cares for us. And another thing: he knows what it is to lose a son. I can't think of a better confidante for David and me than that.
-K
Little mysteries
It's been several weeks since this happened, but it was stirring so I wanted to share it. We three were sitting on the couch one night, watching -- I don't remember, something Princess or Disney or Dora -- and without any apparent motivation, a lullaby Pooh Bear that was sitting on the arm of the other couch started to play. We all just, kind of, looked at it for awhile. Then, Meaghan chimed "I'll go turn it off," and we said, "Okay, yeah. Okay." Well then I felt guilty about it. I mean, who knows?
So fast-forward to a half hour later. I was getting Meaghan settled into bed and David was downstairs. Pooh started singing again. Well, I figured David was down there, fiddling with the button, trying to see how this thing started on its own. Later, after I came back down, I saw that Pooh had moved onto the seat of the couch. I asked David, "Is this a test?" He looked at Pooh, somewhat sideways through accusing eyes, and said, "Yep. It started again." So. No fiddling with buttons. It had started up again on its own. Its apparent own. I love the idea that Christopher was among us, playing with us, letting Pooh sing.
We've got a growing bibliography of really good books around here. So many of these books have been gifts, some from bereaved parents and other folks grieving lost little ones, others from good friends wanting to help us in our pain. I'm also making good use of our local library. Two of the titles that have reached me in particular were written by bereaved parents: When the Bough Breaks, and A Grace Disguised. Reading these books has been like reading a mirror of our own experience. Any comment beyond that becomes trite. When asked, "how are you doing", it's tempting to press a copy of either of these books into the palm of the asker. I'm continually amazed at how deeply I can relate to complete strangers simply on the basis of having shared the same sort of loss.
David is working at burning our collection of digital video camera recordings onto DVDs. The process requires letting the tape run while exporting to the computer. We don't get the benefit of audio while this goes on, but we do see a little screen on the monitor showing the action. Watching Christopher learning to walk and exploring the boundaries of our then-new house is a little like watching old 8mm film of my older brothers. Wandering the house, falling to his bottom, picking up a book, his "big diaper butt" wrapped in soft jersey sweatpants. It is a little like watching a stranger. His was such a short life but still I have these compartmentalized memories of his many different stages. Nursing, old house, Meaghan in diapers...crawling, new house...playing in the grass, pushing his pushtoys, grabbing at Meaghan, chasing the cat...then fighting cancer, hospital stays, long car trips, injections...the vigil, slowing down, his last bath, then the veil of the next life descending over his face.
I'm beginning to miss the relationship he and I had, the unique connection that is more than the sum of its parts. When I learned we'd have a boy I was a little baffled about what that would be like. Now I know that it was like falling in love. I know we'll be together again but honestly, the earthly life is pretty long, and these recent days, sometimes it's hard to see beyond the dust. -K
The trouble with normal.
Grieving is the pits. Anyone who can honestly suggest that there is any sort of normal after losing someone so dear is severely stunted. That's all I can figure. But it's ironic. Normal is now a parody of what once was, but - and I've been reading a lot about this - the
good news is that David and I, and Meaghan in her pristine way (that is, not clouded by any sense of what
should be), are exactly where we need to be: we are grieving normally.
Typing this, I feel like I've returned from vacation to a radio broadcast that no one is listening to anymore. I've had lots of moments when I think I should post something, to let folks know how we're doing. One downside of not keeping this blog going after Christo' died is the impression that we're all doing fine, back to normal. Well, we do fine, sometimes, but there is no normal. I've joked that it's a "new normal", but it isn't even that easily packaged.
I am realizing I need to learn how to live again - gads what a cliche - what I mean is, how to live in grief. The emotional roller coaster (sometimes roller derby) is never the same ride twice. For a couple of weeks there, I thought I had settled into a cycle of grief that would be my unique cycle: restless, angry, accepting, pining, desperately sad, grateful. Great. I can handle this. One day, maybe two, then the next emotion would take over. But then a new week came along, and it was, in its entirety, the most awful mourning I can imagine. For five days I couldn't go three hours without buckling into a ball and sobbing uncontrollably. I eventually leveled out but in the days that followed, anytime I felt the sadness coming on I braced myself for another series of days with no relief. This is not the "living on the edge" I had anticipated for myself in my early adulthood.
Whoever coined "wherever you go, there you are" perhaps had grieving in mind. There is no true escape from it. I have fantasized about having my boy back, what he'd be doing, if he'd be getting into mischief, continuing the chasing and playing with Meaghan they both had just begun to enjoy, eager for Spring. We saw a boy at the children's museum last weekend who so keenly reminded me of Christopher that I had to pull myself away from staring, concerned that his parents might make me for a deeply disturbed woman (well....). Only, his eyes were brown, not those bluebirds Christ'r had.
Meaghan is approaching her grief with many questions that we are eager to hear. She woke late one night, when we were heading to bed, and asked where that tumor came from. "The deepest, darkest pits of hell" is not a phrase I wanted to have to explain at preschool, so we stuck with the truth; no one knows. I suspect her worries will morph and deepen over time. We have found what seems to be the best approach with her: giving her our time and attention and affection. I guess that's what all kids need most of, and she needs it so much more now. Strange how this experience has re-presented all things so simply.
Christopher sent us a tangerine-fuschia sunset tonight, with puffy clouds emanating from the base and fanning out over the sky, fading to peach and rose and finally blue. Such a fabulous artist. His mentor's not bad either. -K
In Christopher's memory
I've heard that folks trying to make contributions to Christopher's memorial funds have hit a bump, that our e-mail address is required. One to use: karinanddavid@msn.com
We're so grateful to all the folks who have made memorial contributions. You're an amazing bunch of folks. I'll keep this blog posted with progress on the lab level, and other good things to come out of your gifts. We know of a few hospital cribs in both hospitals that can use at minimum some WD-40 on the side rails...so we'll be looking to help in that way too.
As for us, we're doing pretty well, considering. Christopher's memorial was everything we'd hoped for: stirring and contemplative yet hopeful. His internment was a brief service Sunday, probably the hardest moment for us in terms of finality. David described it as the bookend that matched up with the afternoon we got the MRI results back in September. That feels about right.
Working again at the pharmacy provides a distraction that is not entirely welcome. We've spent so many weeks immersed in every passing feeling and living for each moment, it feels unnatural to be focused on anything else. I had to get to Thursday night before I could let go and let the angst take over for awhile. I find that when I leave the pharmacy building and see the clouds and feel the breeze I realize, oh yeah. Kind of like going to the movies and then coming out, realizing you forgot all about that slowly leaking tire out in the parking lot. Except, in this case, the car's been totalled and you've got to figure out how to limp it home.
I heard from Hospice today, and I'm sad to report that they've got a new baby on their rolls: an 18-month-old. I don't know the circumstances. The social worker asked if we'd be interested in a parent's support group, meaning after the family's loss, and I said of course and what's more, if those parents need someone now, we're here. There's a distinct kinship we never considered through all of this. I can think of nothing more nurturing to ourselves than to pay it forward.
Blessings to everyone who has kept us in prayer...we are so so grateful. -K
Suggestions
Organizations where gifts in Christopher's memory, in lieu of flowers, may be made:
Children's Hospital
P.O. Box 50020/MS200
Seattle, WA 98145-5020
Sacred Heart Children's Fund
P.O. Box 2555
Spokane, WA 99220
Both organizations provide for research on improving treatment - and we hope, one day, a cure - for brain tumors. -K
Service time finalized
Saturday, January 28, 2006, 11:00 AM
St. Stephen's Episcopal Church
5720 S. Perry St.
Spokane, WA
A simple lunch reception will follow.
Christopher among us.
On Tuesday evening, snow fell across our area. Big, fat, fluffy flakes that - although they didn't last long once they reached the ground - very clearly let David and I know that Christopher is OK. We had been enduring Seattle-like rain for these past few weeks, and hoped daily - loudly - for some snow. Well, Christopher heard us.
Christopher also heard me in the grocery store yesterday. I was SO ready to go, and David was looking for a particular type of lightbulb (ya never can seem to find the one ya need), and I started getting agitated. I needed to rage. I needed to cry. I needed to get out of there. Soon after, in the checkout line, just as the checker was finishing up and I was writing out my check, a broad-shouldered man of about 50 started unloading his purchases behind me. He was humming a deep, low hum. Then he started singing aloud: "Swing low, sweet chariaaahhhht..." the whole verse, over and over. I have come to a place where I don't let those moments go by, so I turned square to him and asked, "Did someone send you to sing to me?" He looked at me plainly but with such intent that I knew, I KNEW Christopher knew I needed a push. So I just cried, and this stranger talked to me, and we felt Christopher all around us.
A word about rage. Lest our experience appear Pollyanna-ish, I can assure you that we have our outlets. I have suffered some pretty banged-up toes from kicking empty detergent bottles across the garage and busting cardboard boxes - some don't give up too easily - and letting that rage fly free. We've found lots of ways to express it. We have a supply of whiffle balls and a bat, but on the downside we now have a fence. To the question "what can I do?" I say, can you run around and gather up the balls? -K
A word about arrangements.
We have chosen January 28 for a memorial service for Christopher. It will be at St. Stephen's Episcopal Church in south Spokane. The time is yet to be finalized.
We are looking to establish a foundation in Christopher's honor to provide for research and development of a real cure for brain cancer patients. When that information is available it will be posted on this site. Please consider a gift to this foundation, once established, in lieu of flowers. Thank you. -Karin, David & Meaghan
A host of angels...
carried Christopher to his saviour this morning. He is healed, he is held, he is forever in our hearts. -K
Lessons
We apparently have lessons yet to learn from Christopher. He continues to keep us warm in heart and hand. We are confounded by his strength and endurance but as each hour passes we cherish the time more.
I am convinced that the prayers for peace are being heard and responded to. Christopher has such a look on his face that we can be sure he is surrounded by angels who have heard our call. -K
A brief visit...
I've been honored to spend the past 36 hours with the family. Christopher has proven stronger than could have been known and glimpses of smiles and an occasional brightness in the eyes have been seen. Aunt Arlene found a small rock in the garden, cleaned it, and with our help Christopher played with it for a time. It was hard to tell if this was a game for him or if he was just bothered by it all. He seems very comfortable and there is no evidence of any pain or distress. I'll be leaving again for home shortly but wanted people to know. Take comfort where you can and cherish your loved ones.
Lyman
To all my friends and family...
who have sent messages of love and care and sadness at the news of Christopher's gradual downward slide...thank you so much for taking time to let us know we are in your hearts and prayers. It means so much to all of us to know this huge network is there - it is such a comfort.
Barbara
Light a candle, bring stones.
His breath is shallow and peppered with apnea. He opens his eyes from time to time, usually just in slivers, but I think he still sees us and knows who is here.
Christopher's great-auntie Norma has lit a candle for him, to light his way. I like this sentiment and so ask (provided it's done with care...we don't need any other tragedies!) others to do the same. If this doesn't suit, I have another suggestion, but first a brief story:
One of Christopher's favorites activities while playing outside was to collect rocks, one by one, from our rosebed in the backyard and drop them, one at a time, between the gaps in the rise of our deck stairs. I don't know if he enjoyed the clack as they landed out of sight, or the pattern of picking a stone, walking to the steps, and dropping it through. He did it over and over, everytime we played out back. And as last spring and summer moved into fall, Christopher had created a respectable mound of rocks there behind the steps.
So my alterative to lighting a candle is to consider creating a small pile of stones in his honor. -K
O come, angel band
Come and around me stand
Bear me away on your snow white wings
To my immortal home
O bear me away on your snow white wings
To my immortal home
Christopher is waiting,
somewhat impatiently, for me to put this aside and log on to the Teletubbies website. My mommy sense says he is in desperate need of a nap, but he's unwilling or unable to let go and let sleep take over for awhile. I think I can relate. Last night I was so stuck on just watching him that I was for awhile unwilling to turn out the light and close my eyes. Eventually I did, but it was a fitful night for the parents. We were hit by a wind and rainstorm that lasted through the night and into morning, gusts we guess of 50 mph or more and rain that slapped the windows and pressure-washed the siding. Christopher slept rather well considering the way the conditions outside roared inside. He's just not been able to sleep again since 8 AM or so. We've wondered quietly to each other whether he is taking in all he can with what remains of his time and his ability. We are most definitely absorbing all of life with him that we can. It is distilled down to the most essential gifts: time, attention and most of all, love. -K
I said to my soul, be still, and wait without hope
For hope would be hope for the wrong thing; wait without love,
For love would be love of the wrong thing; there is yet faith
But the faith and the love and the hope are all in the waiting.
Wait without thought, for you are not ready for thought:
So the darkness shall be the light, and the stillness the dancing.from East Coker by TS Eliot
Hearing from you all...
truly does bring us the comfort that you intend. It is really amazing. Thank you a million times over.
We had a long break today from the reality of Christopher's illness for some recreation at the YMCA while Christopher stayed with two of his Grandmas. We were glad to have a little respite and exercise. When we've escaped into a movie on TV, the sensation when it's over is quite depressing. "Oh, that's right. Here we are." But when we divert our attentions from Christopher to get some exercise it's not nearly the shock to return to his care, and it certainly helps fortify our reserves. Maybe it's because, in part, that while working out we're not completely distracted from the reality, but rather we're processing everything in a more active way.
Christopher again spent a lot of the day sleeping, or appearing to be sleepy. We're working to offer him other choices like reading or play, as much as he is able, and he'll often enjoy some books for awhile. He even played Dora Candyland yesterday, with lots of help with turning the cards and moving his piece (he prefers the Backpack). He's still very definitive with what he wants, no change from the boy he's always been. -K
More sleepy days.
Christopher was pretty sleepy all day yesterday, then got more animated around dinnertime. We got a few smiles too!
Hospice brought by some books about end-of-life issues. We are going to focus some attention on giving Meaghan some sort of roadmap about what may be ahead. So far we've answered her questions simply and honestly, but it has been recommended that she might benefit from a bit more information than she can find the questions for.
Our clergy visited last night and brought great comfort to all present.
I never imagined us being in a time of such distress, or at the receiving end of such profound giving. -K
We hear from people daily...
from all sorts of places, and we so much appreciate your words of encouragement. We have no idea how we are getting through this, but what we have learned, I think, in the three short months since Christopher's diagnosis, is that there is no way around it. It is so awful and trying but there are no alternate routes. It is comforting to have so many prayers going up on Christopher's behalf. I am amazed daily by the folks "in the woodwork" who step forward and let us know they care.
Today was a bit more of the same for Christopher: a bit more weakness, a bit more sleepiness. He starts off the night in his crib in our room, but by and by he wants to be closer and snuggle. At the same time, he has little interest in having his hands held. Tonight he gained serious relaxation with a leg massage.
Christopher's finger poke today went rather well. He may not have a lot of feeling in his left fingers - something we've suspected for some time - because he flinched just a little, and cooperated for the whole draw. With all his little body's been through, he seems resigned to these relatively minor inconveniences. He's the toughest of all of us. -K
Christopher is definitely...
more comfortable today, but is clearly having some motor difficulties on the right side. I had to remove his fork at lunchtime because I feared he'd harm himself with it. The tremors look Parkinsonian, and I can see he gets frustrated. He resists any manuevering of his ankles, but doesn't seem to mind having his legs pulled up tight to his chest. I also put him on his tummy awhile today and he seemed to kind of like it, sprawled over the big dog. He did a few push-ups from there too.
Our Hospice nurse came by today to check in. We'll see her about twice a week for now. Tomorrow Christopher has a finger poke for some labs. We're going to try that, anyway, and give that port access a little healing time before the next big blood draw.
We're early to bed tonight in hopes for an easier send-off to school tomorrow. Meaghan has been dragging herself from bed the past 2 mornings (OK, I guess we're dragging her, actually). I suppose lots of kids are doing that this week. -K
Went for a walk...
this afternoon to our neighborhood park. I held Christopher and played on the swings but he was not sold. He didn't fuss at all during the outing, just sat in the stroller and watched. I thought a couple times that he'd fallen asleep but every time I peeked he was just looking around, pretty content. It's a nice switch from the back-arching restlessness he's been experiencing up till yesterday. I got a big smile this morning when I suggested we watch "Caillou"...I milked it pretty good, too, repeating "Caillou" over and over until Christopher's smile faded and he looked at me like, OK Mom, can we watch it now or what?
Meaghan's back to preschool without a hitch. She starts an 8-week class at Civic Theatre in a couple of weeks. We don't know the format of this class but we're pretty sure she'll be lobbying to just act out The Lion King.
Today Christopher has been having a bit of trouble with his right hand, so we've switched him to a shorter 5 oz. bottle rather than the full-size 9 oz. one. I think the heft of the bigger bottle was more than he could manuever. He just seemed a little shakier with it today than before.
Tomorrow we'll have a visit from the Hospice nurse; it's actually someone my mom knew back when she was at Deaconess. Such a small town. -K
Looking back...
at pictures of Christopher. Even as recent as mid-September he was running around, eager face, splashing his sister in the tub, delighting everyone with his bright smile.
We moved his crib into our room because I find myself needing to have him close to hear him breathing through the night. I entirely missed the notion that Meaghan, upon seeing his crib maneuvered into Mom and Dad's room, would instantly and vehemently also want to "be close". At present she's had a bath and a viewing of The Lion King since insisting the change, so perhaps, for tonight anyway, she might forget. I actually wouldn't mind having her in the room with us as well if we could find the space. We bunked all together for many days when at the Koenig's...
Christopher had some labs done today. Quite routine for him now. He didn't even flinch. Thursday we'll get by with just a finger poke for his labs and let his port heal a bit. After the five days straight, he's pretty bruised. We've got some new meds to help with muscle spasms, the cause, we think, of his distress some of the time. For today they seem to help a lot. -K
go with the flow...
and most of that's been tears. We are trying to enjoy these days but it is difficult to watch what in most ways appears to be decline. Christopher has had his aunts and uncles at hand this weekend, which has been good for everyone.
Hospice is in place though we've experienced already some "misadventures" that make this journey that much more difficult. Advocate, advocate. Stand up and don't back down. Seems we shouldn't have to drain ourselves in the bureaucracy when our attention belongs with Christopher. Seems to be the nature of the trail.
We're beginning to hear some of Meaghan's perspective rise to the surface of her talk and her play, sometimes in general terms and other times in very specific ways. Today as she and Christopher and I had quiet time in bed, she told me that in two more days (hold up those fingers now), Christopher would be not sick anymore.
From her lips to God's ears, we pray the same. -K
Happy New Year
New Year's Eve
As 2005 ends and 2006 approaches, I thank each and every one of the friends, family and extended others for their love, concern, and prayers for Christopher and our family. Knowing the enormity of this net gives us a good feeling in our hearts, that this world does consist of mostly good souls who truly do care. Thank you all again, and my heartfelt wishes for each of you for a new year that will bring peace, joy and understanding. God Bless you!
Home again
It's good to be here. The cat so missed us. He even let me hold him still while both kids ran their hands all through his fur. He just purred. Kids did great on the ride home; Meaghan slept nearly 2.5 hours, Christopher slightly less. It was good for us to have that time to talk and vent and cry and talk and vent and cry some more.
Hospice of Spokane met with us today -- two exceedingly peaceful and generous souls who seemed genuinely fond and concerned for Christopher, and for all of us. Meaghan was unusually outspoken, introducing herself and flitting about the fringes of our meeting, giving us little moments of joy during a difficult conference. Their services are very broad and beyond the medical needs, include emotional and respite support. We will be hearing from them soon about some volunteer hours we can take advantage of.
It will be a busy weekend with lots of family coming here to see Christopher. David and I continue to approach each hour attempting to be as fully available to Christopher and Meaghan as we can in the practical as well as emotional and spiritual senses. It's not easy but acknowledging that seems to be a good start.
We came home to piles of Christmas cards with kind messages of hope and healing. It's so good to hear from so many who are thinking of and praying for Christopher. -K
Hard facts
I don't know if this will be helpful, but in our meeting yesterday it became clear that at any time (and in fact for the past several weeks) Christopher could experience a couple of different things that would not be surviveable. In either case, his experience would likely be fairly rapid but fairly painless. Though it is hard to imagine, kids who can verbalize and have experienced these things have reported no pain. The 2nd half of last night was a bit restless. His limbs often contract and I think he may have cramps from time to time. We have some meds to help with general pain and perceived pressure, but we're starting to see some signs that love and being close snuggling can be just as comforting.
I don't know if that's helpful, but at least we can see clearly all the possibilities.
Still planning to pack up and head home today. Still praying for a miracle, or at least a miraculous response to the chemo. -K
Our meeting today
went rather well. I think the comprehensive approach allowed for the free flow of ideas but also the team approach kept the meeting moving toward our goals. We are so grateful for having this opportunity. I think it has brought us both a greater sense of peace knowing what we might expect and how we might react, in any given situation.
David and I feel fairly comfortable now with driving home. A palliative care/hospice agency in Spokane has been introduced to Christopher's case, and we will be eager to make contact with those folks right away once home. We will continue with this chemo study as planned and hope for amazing results. We could still use a miracle.
Christopher's condition hasn't changed much in the past couple days, though we detect that he is a lot sleepier. We've backed off on the steroid and so far he's tolerating the change. I'm thinking he might be making up sleep for the pretty restless days and nights of the past week or so. His eyes are a bit listless, although he can focus and "speak" through this nonverbal interaction. We have long conversations this way.
There's a lot of packing to be done. It may take a day to do it. We'll be glad, I think, to be back home. -K
Thanks, Lyman, for setting up the comments.
Comments enabled
Karin requested that I enable comments for the blog. If you'd like to leave a comment please click on the "comments" link under the message you'd like to comment on. Couple of things to note:
- You will be taken to a second window to post your comment.
- Please enter your real name so we know who's talking.
- Using the letter verification screen keeps robots from making comments to the blog...that's why it's there.
- This comments section will be open to anyone so all comments will be reviewed before posting. I'll try to do this a couple of times a day to make sure the comments are posted promptly.
If you have any questions feel free to put them in your comments at the top. I'll remove them before posting.
Fifth and final...
day of the first round of this study protocol. Labs tomorrow, then again Mondays & Thursdays for 3 (or 4?) weeks. Surprisingly, doing this chemo over the holiday weekend was easier than a regular weekday. The staffing was low, but so was the patient volume. Today, we had a long wait for nearly every step. I had to be a squeaky wheel. Such a departure from my natural personality :)
We believe Christopher is having a lot of discomfort right now. Tomorrow, among other things, we'll be discussing pain control with his team. We have a meeting scheduled tomorrow afternoon with both neuro-oncologists and the neurosurgeon, plus the Children's palliative care team. If I know anything right now, it is that I can't stand watching our baby boy suffer. It's absolutely dreadful. And another thing I know is, we have to walk this path, right down this path, wherever it may lead. There are no shortcuts and no pit stops. We are working on feeling everything fully and in the moment. Christopher has been enjoying long evening baths. I think it relaxes those rigid limbs and settles him soulfully.
We are unsure about leaving the Seattle area right now. The group in Spokane can handle the frequent labs without any trouble, it's just the complexity of being away from Christopher's primary team that is a concern. Plus the 4+ hour ride home. After tomorrow we hope to have a better sense of options and what to expect next, and hopefully we'll have some answers to the matrix of questions that we've been stewing over these past few days.
Recently we've learned how many folks are checking this blog. It's nice to know; makes us feel a lot less alone. Lyman was going to see about a way you can leave us a message via the blog. If/when that gets worked out it will be passed along. Meantime, thanks for listening. -K
happy Boxing Day
Christopher's chemo yesterday went OK. We found a combination of comfort meds that we think helped him through the particularly rough spots. Today was the same. Tomorrow is the fifth day and I'm sure he's quite ready to be done with it. We haven't set our plans to return home yet, though we expect it will not be long. We miss Cornelious. It's a bit daunting to think about not being 30 minutes away from his primary providers. It's all daunting. Overwhelming, actually.
We are trying to find a balance between hopefulness and reality. It's like being on a pendulum, swinging between two states of mind.
We hope everyone had a peaceful Christmas. -K
Christopher received a blessing...
...at church tonight. We also remembered tonight that Christopher is the patron saint of travelers. My, but what a journey.
His first 2 days of the new chemo were a struggle. They don't have a great deal of data on reactions to the enzyme agent. Yesterday he was restless, followed by a time of almost euphoria - he was grinning and interactive, actually - then after the chemo he was inconsolable for nearly 2 hours. Awful time. He repeated the course today and also repeated the restlessness and inconsolability. Unfortunately we did not see the euphoria. He's quite tired.
Merry Christmas and peace to all. -K
New protocol...
...is underway today. We're fortunate that Christopher will be able to receive his treatments in clinic then go home (to the Koenig's house) rather than stay in the hospital all weekend. He'll be getting 5 days' worth then, provided all goes OK, we'll head back to Spokane and do the twice-weekly labs there. Not much else to report. We're still grappling with this. It's very hard. -K.
Our meeting today...
...with the neuro-oncologist and neuro-surgeon (the latter by phone) was difficult. Radiation remains an untenable option chiefly due to the immediate effects of edema. A surgical removal also remains highly risky and unlikely to relieve Christopher of 100% of the tumor. This may buy him some time by allowing more room for the tumor to grow, but the effects of such a surgery, both in terms of the operation itself and the recovery phase, could be devastating. It remains a possibility but at present, Christopher is still able to function in many ways. He signs for his milk and for hunger, and smiles broadly when his communications are understood. He gives us great joy in the tiny things children do, like fall asleep in our arms.
We do have 2 chemo options yet available; one is traditional, the other a phase 2 study which would be done in an outpatient manner. We are leaning this way, but a few things are unclear, specifically regarding when we should begin, before or after this weekend. It is, naturally, a skeleton crew at the hospital starting Saturday, and the only way to begin the study over the weekend would be as inpatient.
The other option is to make Christopher comfortable and proceed with palliative care. We're not quite ready for that step. But recognizing that this is an aggressive tumor, we are beginning to test the waters mentally and spiritually.
Miracles happen. We're ready for Christopher's. -K
MRI yesterday
is not what we hoped for. The tumor has grown, quite a bit. We have a meeting today sometime - waiting to hear when exactly - with our neurosurgeon and neuro-oncologist to discuss our options, of which there are few.
Christopher may well be very unstable, so we are not going anywhere for the time being. We have some tools at hand to keep him comfortable but we don't want to have a situation emerge that puts him in jeopardy outside the range of Seattle Children's.
God Bless Christopher.
More later. -K
More info
Just talked with Karin and the family has left Spokane on their way to Seattle. I'll proably get some of these details wrong, but here's what I think I know:
They'll be with David's sister tonight and at Children's Hospital for a 10:45AM MRI for Christopher. A CT scan in Spokane has verified that the current swelling issues are not related to the shunt, but there is not enough information from that to base any decision on. So the MRI was ordered to try and determine if the additional/ongoing swelling problems are tumor related. If they are then a change in treatment plans may be necessary. The next MRI was scheduled for mid-January so this is a pretty major concern.Karin tells me that they packed for a week (Christopher's next treatment was scheduled for Seattle next week anyway) and aren't sure where they'll land for the holidays. (Pretty low on the radar screen for the moment.) I've checked the road and pass conditions and they're favorable for the duration of the trip so that's one less thing for them to fret about. I'll be in touch with Mom and Karin (as she's available) and keep posting here as information comes in. Karin passes along thanks for prayers, good thoughts, etc.
On the road again
I just received notice from Karin that they are headed to Seattle with Christopher (and Meaghan of course). I don't know many details other than that Christopher has been throwing up and his left side continues to deteriorate in terms of his mobility. It's my understanding that an MRI will be done on arrival at Seattle's Childrens Hospital. I expect to talk with Karin while they're driving to get more information and will post it here.
It's Sunday night...
and after being on steroids, to reduce swelling, since midnight, Christopher finally seems to be doing better. He's able to stand for longer periods and even walked around a bit this evening. He went to bed awhile ago, really tired because the medication interferes with good, solid sleep. So, he was up a few times in the wee early morning hours, plus did not have any good naps. Today the doctor recommended continuing the steroids through tomorrow, when we'll talk with the team in Seattle. We're not wild about the side effects of this medication but if it helps him remain mobile, we are all for it.
Hopefully we're in for a nice long night.
It's Sunday...
...and as of last Wednesday, Christopher started having significant problems with balance and walking. Yesterday we called the peds oncology doctor on-call and talked it over. We went in for a CT around 2:30 (just as the pharmacy staff Christmas party was getting underway...at our house). The doc requested a contrast on the scan, so Christopher's port had to be accessed. The worst part of
that is the tape that holds it all in place. He slept mightily throughout the scan, very cooperative. We came away around 4:45 with a CD of the CT in hand, but it wasn't till after 9PM that we heard from the doctor. Not surprisingly, the CT yesterday was "different" from 11/7 (pre-shunt), however it's not a powerful enough image to determine if we have tumor growth or tumor death, or even any sort of neurological reason for his diminished mobility. It could just as easily be the vincristine (chemo) that is the culprit.
The radiology dept is fedexing the CD over to Seattle tomorrow, and we'll hear their opinion tomorrow by phone, as well as (probably) Tuesday after they view the images. We'll try to keep the updates going as the next few days unfold.
What a week
Christopher narrowly escaped an admit last week. He wisely timed his fever with a high ANC count, which allowed him to receive an antibiotic then go on home. The next day (Friday) we returned to have his port access removed, and at that visit he had no fever, but his ANC was way low. Swap those scenarios and we'd have been admitted through, likely, Monday.
Meaghan went with us on Friday and she got to know a few of the nurses and volunteers, played in the playroom, and helped entertain "Chris-toe" while he was de-accessed. She was a big helper and I think Christopher was intrigued to see his sister in this place with him, enjoying herself, even.
Sunday we put the kids on the tobaggon and went up and down our street a half dozen times. Christopher was only mildly amused -- slightly more tolerant once a parent was on the sled as well -- but Meaghan had a gas. David took the plunge and sled with her down the next street to our east, a fairly respectable hill. Then I took a turn with her and was laughing so hard I cried. This was bewildering to Meaghan but after the 2nd run she recognized that sometimes we can laugh so hard, we cry. Or pee. Luckily we avoided the latter. The evening was so still, with every branch in every tree and bush crusted over with white. It was like being in a gingerbread scene, surrounded by sugary sprays of white. Our snow cover persists, and seems to be slowly evaporating in the extreme cold rather than melting away. We're looking forward to getting our x-c skis from the lake and put them to use here at home.
We continue to be so grateful for the support and prayers for Christopher. Wishing all who read this a peaceful holiday season...
Holding our breath
We dodged a bullet, at least for the moment. Today Christopher woke from a 3-hr nap with a bit of a fever. It soon dipped/climbed/dipped again, enough to keep us home anyway. We’re holding our breath through the night. We'd sure like to keep him out of the hospital if at all possible. The protocol says that with a 101.0 fever he's supposed to go in and get on antibiotics, and stay there until his counts are climbing over 200 (he’s below that now and dropping…takes about 4 days to recover…incidentally, no Tylenol allowed: we don’t want to mask anything.) Except, we’ve seen this 2x before: after the vincristine, he spikes, then it attenuates within a few hours. So, if history holds, we should be done with any rise in temp by about, oh, midnight. Then he’ll be back on track. He's sound asleep for now, following a pre-dinner playtime that I think wore him flat out.
Welcome to the Christopher updates....
I am grateful to Lyman for setting this up. I haven't wanted to overwhelm our supporters with e-mails; posting updates on Christopher's progress and letting folks check in whenever just makes sense to me.
The weeks since October 1 have been a roller coaster. Even though we have a calendar of Christopher's chemotherapy protocol, it is subject to change -- and has changed -- for any number of reasons. So, I should mention that mom's notes to her support network don't always reflect the exact flow of Christopher's experience. But truly, that matters very little in the big picture and this isn't meant to be his medical chart anyway. What does matter is the support network for her, and for us, and for everyone who has been touched by Christopher's mighty challenge. We are amazed, daily, by the goodness of people. Meals, errands, cleaning and breaks...we've even had our driveway snowplowed twice now by mystery helper neighbors who are the essence of goodwill.
Today Christopher had a dose of vincristine and met with physical therapists to consider his left-side weakness, arm and leg. He also went through a car wash, an espresso stand, and dropped off the recycling. He willingly drank about 4 ounces of water tonight with dinner - a real achievement for someone who has pushed away every beverage we've offered since last Friday. We resorted to the oral syringe over the weekend, but he's wise to that and gave us a real fight. Hopefully we're turning a corner tonight. His ANC (absolute neutrophil count - includes white blood cells, which fight infection) has dropped under 200 so he's in a very vulnerable condition at present, and we expect he will drop further over the coming 4 days or so (normal is over 1,000). Lots of Purell and limited contact.
Current plan is to do the next inpatient chemotherapy in Seattle during the week after Christmas. That's a four-day stay, followed by a 2-week break, then the first MRI of the protocol will be around Jan. 18.
Thanks for the ongoing prayers and positive energy. Like any roller coaster, this one has highs and lows...knowing we have so much support helps temper the lows. -Karin
The new Christopher blog...
Karin has asked that I create a blog for posts and updates about Christopher, his treatment, and other family news. Karin and David have a lot on their plates right now and getting information out to family and friends has been difficult at times. Hopefully they will find this to be a useful tool.
To get the blog started I've posted Mom's past emails regarding Christopher's diagnosis, treatment plan, and his various hospital visits thus far. These are below and the dates are indicated.
If you have any questions feel free to email me or Mom for more information. I have a feeling I'll be hearing from Mom frequently until she gets the hang of this blog stuff!
Uncle Lyman
Monday 11/14/05
Hi All,
Christopher was to have his vincristine push at the hospital yesterday (Sun 11-13 - his 18 months birthday) then be discharged. Karin and David will continue to stay with the Koenig's in Kenmore (David's sister/family) until Wednesday, when the doctors want to see Christopher again before letting them go back to Spokane.
When I left on Saturday, he was beginning to look like he felt better, and seemed to be recovering from the surgery to implant the shunt which was done on Friday. Karin indicated he had a pretty good night, with a couple of good sleep sessions, which also gave her an opportunity to sleep. Sunday he was eating well, and more animated than he'd been for awhile, which is always an encouraging sign. David had taken Meaghan to the Koenig's and apparently was able to get a much needed good night's rest.
They are considering doing the next Chemo, which also involves a 2-3 day admittance, in Spokane rather than in Seattle to allow themselves some home time. I will be with them after that to help, as before.
We continue to pray for healing for Christopher, and that over time, he will adjust to these invasions of chemicals into his little body! In January another MRI will be done to compare with the original one, and to determine if the tumor cells have stopped dividing. By then he will have had three cycles of the chemo therapy, and they should be able to see some sign of change. Your prayers are appreciated by all the family, and I thank each and every one of you who remember Christopher and send good thoughts his way! God Bless you all!
Love, Barbara
Saturday 11/12/05
Hi all,
Had a call from Karin last evening while I was out with friends, and because Christopher had been so miserable all day, and it just seemed to be getting out of hand, they took him into Children's (Seattle) where he had surgery to insert a permanent shunt so the brain fluids would begin to drain again as they should.
They have been in Seattle since Monday, when they flew over, and have been in and out of the hospital over the past several days, with the surgery planned for Monday (14th). But, due to his discomfort and all that went with it, the decision was made to just get it done. I have not yet spoken to Karin or David this morning, so don't have an update on how he is doing today, but am hopeful that this will alleviate the pain he has been having and prevent pressure from building up as his chemo treatments continue.
The doctor had also decided to skip this week's 'push' of vincristine since Christopher was so uncomfortable, and that he had enough in his system to carry him to Monday - now that they surgery was done, I don't know yet if that is still planned. I am thinking it may still happen, and that they would then be discharged. The idea to do it on Monday was so that when Thanksgiving week rolls around, he would have his next chemo and the 3-day hospital stay that will involve prior to the holiday. We'll see...things just move hour to hour with this situation, and we don't know from one day to the next what will be in store.
As always, your prayers and thoughts comfort us...and we'll get through this!
Barbara
Wednesday 11/9/05
Hi All, Sorry it's been so long since the last update, but I've been out of town, out of touch, and several times, close to running out of gas! Chrstopher had a bad time last weekend after his first "push" of the Vincristine - and fortunately, I had gone to Kennewick to visit the older grand kids, whom I hadn't seen in awhile. I say fortunately, because Monday morning, Karin called and asked me to come to Spokane...they had gone into the hospital the previous Thursday when Christopher spiked a fever and it did reach 101...and they were still there! He had a very rough night on Sunday, leaving both Karin and David sleep deprived, as well as himself. Meaghan was with the Redmond grandparents, thankfully. I got to Spokane around 10 am, and Christopher was about to leave to go for a CT Scan, to try and determine what was causing his distress. Once the scan was complete and Christopher was back in his room, Karin rounded up Meaghan who by then had arrived with Mary Lou, and left to go home for a spell, and hopefully get some sleep. I stayed at the hospital with David, who held Christopher until both fell asleep while I was off to pick up some grub at the Cafeteria. I managed a 10 minute power nap, and later when David awoke, we switched places, and I held Christopher while he had some lunch and made some calls. Christopher slept for probably close to 4 hours total that afternoon, and around 3 or thereabouts, the results came back on the scan. David called Karin and asked her to come in, so she could hear what the doctor had to say...and she did arrive before Dr. Ling arrived to talk with them. I'm not totally clear on all the aspects, but basically, the ventricles were swollen, and closing off the normal pathway for brain fluids to drain. He also indicated the tumor may have grown somewhat, but it was too hard to tell for sure, since if that was the case, it was too far inside for the CT to pick it up. At any rate, it sounded fairly dire that Christopher may need to have the permanent shunt put in. That began a series of phone calls to Children's in Seattle to try and reach Dr. Oljemann the original surgeon, to discuss the findings. Along with that, the kids (Karin and David) decided to take Christopher over and began making contacts with others to pave the way for a flight over (Snoqualmie was at that time closed indefinitely) that evening, and to be admitted on arrival, and all that entailed. Approximately 5:30, Karin, David, Meaghan, Christopher and Mary Lou headed to the airport for a 6:30 flight they had confirmed seats on, thanks to Nicole at the Pharmacy who made the calls for reservations. I picked up the remaining items they had left in the room and took them to their home. On arrival at Children's in Seattle, it was determined that the swelling was something they would expect to happen, and that by then Christopher had settled down and did not seem to be as distressed. They were admitted, because the doctors there wanted to try and determine what was causing the distress and the swelling. They were discharged on Tuesday afternoon, but were to return today (Wed) for the second "push" of the vincristine. The kids have stayed in town to observe how he manages this second dose, and will eventually return to Spokane. Karin's father has arrived and rented a van, so they will all drive together when it is deemed ok for Christopher to go. They are staying with David's sister Elizabeth in the meantime.
More when I have more...thanks for your comforting thoughts and prayers! Barbara
Thursday 11/3/05
Hi All,
Christopher had his first "push" which was a lower dose of one of the drugs in his Chemo therapy...had it on Wednesday. Apparently did ok, was eating pretty well, but late this afternoon began running a fever, which is a clue something is amiss. If it gets to 101.00 he has to be in the hospital. When I spoke with Karin, it was 100.01, and she had been told to bring him in if it reaches 100.06. At this point in time, I do not know if it has reached the critical level, so can't give you any further information.
David was on his way home from the Pharmacy, and if they have to take him in, they will ask David's parents to meet them at the hospital, and hand off Meaghan to them for the night.
Tough times...thanks for all your prayers.
Hope you are all well.
Love, Barbara
Thursday 10/20/05
Good morning all,
Yesterday Christopher had a looking-over, vitals, surgical site, etc., and all is progressing well and he is healing from the biopsy surgery. Karin and David then met with the Pediatric Oncologist, Dr. Jim Olson, who is Christopher's primary physician, to discuss the biopsy findings in depth and to learn the treatment plan.
They will return to Spokane today, and then back to Seattle next Tuesday. At that time, Christopher will be admitted to Children's, and sedated, then a port will be put in place, an IV, and a new MRI done. The first Chemo will be administered, and he will be kept for 36 hours. I don't recall if the chemo will be administered while he is still sedated, or if he will be awake, but I think he will have been awake for that. After the first 36 hours they will be discharged and will go back to Spokane. Then in 7 days, a "push" will be administered of a lower dose of the chemo drugs, and at this point, that will be done in Spokane by the Pediatric oncologist at Children's Sacred Heart. Another 7 days later, another push; and so on, for three weeks, then they return to Seattle Children's for the next big dose, and another stay of 36 hours. This routine will continue, however I do not know for how long.
The next hurdle for his care is how he reacts to the chemo treatments. I also don't yet know what outcome they are hoping for after the treatment schedule, but it is hopeful to know the professionals feel this tumor can be treated and perhaps obtain a good outcome.
Thank you all for your concern, love, and prayers...I know it is helping, and Karin, David and I are grateful.
Love, Barbara
Monday 10/17/05
Hi All,Karin called this evening with the news about Christopher's tumor. It is a Anaplastic Astrocytoma, grade 3. I looked it up on the internet just now and this is an aggressive type tumor, so the news is not good. (Uncle Lyman comment: here's a link to an article describing this type of tumor: http://www.emedicine.com/med/topic2693.htm).The kids will be driving to Children's in Seattle tomorrow and will meet with the pediatric oncologist on Wed to discuss the findings and treatment plans. Please continue to keep them in your prayers - we're going to need all the help we can get. Thanks...I'll let you all know what the next step is for the little guy as soon as I learn more.Barbara
