History

Journal History

Friday, September 8, 2006 12:00 AM CDT

We have passed the five-year diagnosis anniversary, and are rapidly approaching the five-year official remission anniversary. Those are excellent milestones - there has been some discussion among the survivor parents lately as to which marks the important "event-free survival" date. I suppose some people would say "whew, we've put that behind us now," and close down the site, etc. But I imagine I will keep it going for a while. Leukemia isn't over after all.

Right now there are concerns at school about learning 'abilities' and behavior 'issues.' The school wants to do a full evaluation. He is doing well enough, given some extra time and accomodations in homework. His teacher is working to make sure he's successful - yay! I know how hard that can be with a roomful, and everyone's got some 'issue,' don't we?

Down the line I'm sure there will be other issues and questions about whether there are more long-term effects, but for now he's a typical 2nd grade boy in most ways. Such as making his parents crazy! And in the meantime there are fun growing up things that I can share.

So begin the pet chronicles I suspect. We've had a dog since before the boys were born, and they've both had to help feed her for some time. However, Duncan has also been asking for pet mice for years now, and Collin has requested birds for a while. Recently we gave in and first got two parakeets, which Collin named Sam and Phil. The next weekend came the mouse, only one on the recommendation of the pet store, which Duncan named Henry. Aren't these names a hoot?!

Well, I don't know if Sam and Phil and Henry just aren't what they were expected to be - Sam and Phil are still pretty apprehensive, and Henry is somewhat nocturnal - but in my spoiled brats' typically greedy fashion, it wasn't long before they started asking for more. Collin wants fish - even just one goldfish, and Duncan first said he wanted a lizard. Then Duncan decided his next pet would be a cat, but Collin pointed out a cat would get his birds and D's mouse. Strike against the cat. Yesterday D says he could get another mouse and keep it in another cage so they wouldn't fight...

Well... I'll post again when I have some test results if not sooner. Light the Night is this weekend for us -
http://www.active.com/donate/ltnDallas/duncansdashers2006. Snuck up on me this year, but that just shows you how little it's on my mind lately. It's a good thing.

.....
I asked Duncan about going to visit our Team in Training this weekend, and he said he still didn't understand why he was an honored hero. I tell him it's because he was so good for all his treatments - and I used the L word this time - for leukemia. "You mean when I had my port?" Right. And he tells me again how he didn't like the blood pressure machine, "It gave me weird dreams." Oh, that wasn't the machine, it was the medicine they gave you. Do you remember your dreams?

Yeah, he tells me, I was floating and parts of the hospital were all mixed up and it was just one big square! And you had more eyes than you have, and two noses.

Yep - we remember those times - "Daddy, you have two noses." I can't recall if he ever told me that, but I do remember the multiple eyes and noses discussions after spinal taps.

And then there was the time little brother had to be sedated to extract black-eyed peas from his ears and the recovery nurse was telling us his behavior was from the medication. No, we know what the med does - this is Collin! I guess it's good to be able to laugh about these things. I think I've said a million times if I don't laugh I'll cry, so I try to laugh a lot.

Friday, July 7, 2006 11:31 PM CDT

Once again, no news is good news from us. Duncan has entered the after-the-cancer program at our hospital and is still doing well. We don't have to go back for a whole year! A whole year!

The school year had its ups and downs but ended really well. He caught up pretty well, but has now gotten too old for most of the Montessori programs around us and we will give the public school a try. I'm pretty anxious about it, afraid he will fall through the cracks at some place so large. But we'll give it a shot. There's nothing official, no diagnosis or documented evidence of late effects of chemo, but he just seems to need a little more time to finish assignments.

The summer has been taken up with a couple of trips and mostly Collin's appointments so far. We are working on Duncan's handwriting. We had talked about taking up an activity, but we'll see how busy the schedule is the rest of the summer.

We hope you all are well and have a great summer!

Wednesday, February 1, 2006 10:33 AM CST

I know it's been a realllllly long time since I updated, but no news is good news for D. He's still about six weeks away from being 2 years off treatment, but the clinic is moving him to the after cancer program. It's been 4 years and 4 months of remission, which is still well shy of the minimum 5 year mark to hope for "cured," but there is a lot of hope. Of course there is nothing magical about 5 years exactly, I guess that's just the point at which some large majority don't have the disease come back.

Thinking (and talking) about the statistics this morning, those "cure rate" numbers are generally only five years out - five years "event-free survival." As I've said before, statistics lose a lot of relevance when your child gets something that's supposed to be rare in the first place.

Anyway, since September (since I last updated - wow!) we've had lots of school, our annual neuropsych testing (on both boys this time), and Halloween and birthdays and Christmas and a trip to Minnesota. Pretty much normal life for us. Duncan's testing was basically the same, some weaknesses that will probably come along in time, no evidence of chemo damage. For Halloween this year he was Darth Vader - I might have mentioned that already, we bought the costumes in August! For D's birthday we had a big Scooby-Doo bounce house slide thing with about 10 kids over. His big present was a Robosapien, and for Christmas it was a Leapster. We drove to Papa's house a few days after Christmas for the boys to play in real snow, and they did build a snowman and go sledding, but it was warm and never did snow while we were there.

Duncan is enjoying school more now, and is doing really well with his reading. Math is another matter, but we'll figure it out sooner or later. Collin is going to school with Duncan now since his speech improved enough to graduate from public preschool. We also found out he was gifted, so there was no way they were going to keep him. Montessori seems to be a very good match for him and he is starting to read some words already.

That's mostly what our life will be (we hope) for the next several months. The boys are taking swim lessons, and making good progress there too. I wonder what this summer will hold... I had signed up for Team in Training again, but just haven't done the training or the fundraising, so I think I will pull out and try again another season instead of making myself miserable trying to get ready, or continuing to feel guilty that I haven't been participating. It continues to be warm and dry here, although we've had a few inches of rain over the last couple of weeks, it's not nearly enough. We are probably going to have to reseed parts of our lawn. There's always something to do! Which reminds me to look for new photos, although the ones here now are from the summer mostly.

Okay, a couple plugs - Valentine's Day is coming up, which means National Donor Day at Saturn. At participating retailers on and near February 14th, consumers can donate blood or pledge to donate blood, be added to the National Marrow Donor Program Registry, and/or learn how to become an organ & tissue donor. See the link above.

Locally, Children's Medical Center is also having a bone marrow donor drive on Valentine's Day - the 15th Annual "Be A Matchmaker" Marrow Donor Drive, from 8 to 4.

This one is a little bit off, but just in case I don't update again, I wanted to mention what looks like will be an amazing show - Coming to Independent Lens on PBS June 21 and 22, 2006, A LION IN THE HOUSE offers an unprecedented look at the cancer journeys of five young people and their families over a six-year period.

Take care of each other!
Vicki

Monday, September 19, 2005 9:57 AM CDT

Wow, it's been a long time since I updated - that's a good thing, isn't it!

Everything is going well here, other than school. Well, school is going alright I suppose, but getting Duncan there is like torture. He does NOT want to go - did you see the capitalization? "No school, I hate school, school is evil, I am never going to school!" Ugh, several words I would like to take out of his vocabulary. I knew he didn't want to move up to the junior group, he said he wouldn't know anyone. All I can get out of him now is that he doesn't like learning. Sigh. Couldn't get him to join cub scouts or soccer either. He's really not shy or antisocial, just stubborn I think.

Everything else really is going well, we are relatively healthy, other than allergies hitting the big kids (me and dh) over the weekend.

Right now there's just school going on, no big plans. We do have Light the Night coming up very soon (why do we have it so early here, where it's always still so hot?). See the links above, or lightthenight.org if they don't work. I'll get around to testing them one of these days.

Thanks for visiting!

Wednesday, July 13, 2005 11:31 PM CDT

Duncan has been doing well lately. Bit of a panic when I had to take him to the dr the day before I left for my 2nd Team in Training marathon in Anchorage, Alaska! The ped took blood for cultures and CBC and sent us home with two inhalers, nose spray, a script for antibiotics and the worry that it might be pneumonia. Duncan takes medicine more like your typical 6 year old now (No, I don't want it! I don't like that!), but we managed it all, and thankfully nothing grew in the cultures.

We also took our summer vacation, just got back earlier this week. It was only us and one other family this year and we tried the mountains this time, going to Colorado. The boys (our two plus their one) were very happy playing with rocks most of the time - as if they couldn't do that at home! We did some off-roading in the minivan, found a lovely waterfall, waded through the river, had a couple picnics. Took in the parade and took a raft ride, and other than Duncan being cold and a bit disappointed it wasn't a ferry boat, we had a good time on the Rio Grande. Fireworks over a mountain canyon was a great way to end the Fourth of July!

Hopefully Collin and I won't have permanent reminders of our trip. We spent the last few days at the Durango Mountain Resort (Purgatory for anyone over 20). We thought we were going to have a great time on the alpine slide, as we did last year in a different location. But on our third trip down, the sled I was on with Collin went up a side and just kept going, dumping us out into the slide. We both skidded a bit, and have the wounds to show for it. I'm trying to take care of them so they will heal well.

No plans for the rest of the summer - we probably won't even be swimming for a few weeks (see above). Believe it or not, school starts in less than a month, for Collin at least.

Not having any success loading photos right now...

Wednesday, April 20, 2005 6:42 PM CDT

Life has been somewhat busy here, but nothing to do with Duncan's health thankfully. We did pass the one year off treatment milestone, kind of anticlimactic, but who cares? Boring is wonderful!

Duncan is doing great - always asking lately 'what's next?' The novelty of going to school has definitely worn off and there seem to be lots of various little reasons for him not to go (or so he thinks). So I made him a calendar and am reminding him of how many weeks to go. I was looking through the various rec center schedules for the summer and he kept whining he didn't want to do anything, just wanted to stay home with me all summer... Oh my, nothing to do? We'll see.

My uncle passed away last month after a long hospital stay, and so we don't have much family left around us. Duncan had wanted to go see him in the hospital, and promised he wouldn't touch anything when I put him off, but I still hesitate to let him see a hospital as a place where people are very ill, or dying. He asks so many questions these days.

But we were very happy to have Papa Neus come visit us from Minniesoooooota last week. We had a day of hooky and played mini golf and go-carts. We also discovered a cardinal nest in our holly bush and the boys are pointing out the bluebonnets everywhere they see them. Summer will be here before I know it!

Here are a couple of articles/videos of friends from my support listserv - USA Today article about the choices parents have to make in their child's treatment. And here you can find Isabelle who was treated for infantile leukemia and is now a secret agent, or having some great adventure this week.

Tuesday, March 1, 2005 12:32 AM CST

There's been another angel on the survivors board I'm on - Andy, forever 7, was taken quite quickly by a strangled small intestine - resulting from surgery to remove his cancer almost six years ago. It is dreadful how fast they can be taken from us and without warning. I hope you'll join me in wishing peace for his family.

In other news, our household is still fighting the crud that's been going around. Putting quite a damper on my training for Alaska! I've been getting in a few miles here and there, but am wondering if I'll have to cut back to a half marathon. I think Mike has had more ear infections in the past few years than the past two decades!

Collin is now going to preschool five days a week and getting two sessions of speech therapy a week. The class also gets some occupational therapy - I'm not sure it is really a requirement for Collin, but I believe the whole class participates in speech, OT, and motor skills. Of course he could use some help holding pencils and scissors although there's still plenty of time to learn that before he starts school full-time.

Duncan is still healthy, he usually dodges whatever the rest of us get. School is going very well, he got to be the line leader yesterday (maybe we should all learn to take such pride in small accomplishments). There is yet another birthday party coming up in his class - what a social calendar he has! He's had fun at an animal show, in a bunch of jump house/obstacle courses, and he made a zebra at a stuff-a-teddy-bear party. He's been enjoying the Challenge of the Super Friends DVD lately - I think he has the intro memorized.

*****************

March 8 - I don't know how much longer this will last, so I'm not putting up a permanent link, but Saturn is giving away two red wristbands (think Live Strong) promoting bone marrow donation, and giving 50� to the Marrow Foundation for each request. Visit Saturn Donor Center for details.

Hmm, I also just noticed the Saturn Relay Race, anybody wanna join me for 2006?

America's second largest relay race winds through 199 miles of California coastline, including a moonlit crossing of the Golden Gate bridge. The 12-person teams run 36 nonstop legs, ranging from 3 to 8.9 miles.

Wednesday, February 9, 2005 11:15 AM CST

As usual, no news is good news from us. Duncan continues to do great, is enjoying school, and is making the rounds of his classmates' birthday parties (four in six weekends, plus Collin's of course!). Hopefully the girls won't get too carried away on Valentine's Day for we hear he is the object of more than one's affection.

Nothing else in the immediate future beyond school and appointments with doctors and dentists. I have a big announcement though, as I've signed up for another marathon with Team in Training - going to Alaska! See the link above to get details.

That's about all - Happy Valentine's Day!

Friday, January 7, 2005 12:53 AM CST

Happy New Year everyone! Our snow was mostly gone within a couple of days as usual, but if you looked in the shady spots you could say we had a white Christmas here. Christmas was nice, just us and Grandma and a lot of leftovers! Collin is enjoying the building-type toys he got, and Duncan continues to play SpiderMan/Spider people/rescue team...

I've added a link to an organization run by two moms of angels I remember being in the Light the Night walks here. We have been so fortunate throughout Duncan's treatment that I was already able to be an at-home mom to take him to appointments and stay in the hospital with him, and our insurance paid very well. But this could put a great strain on many families - someone has to take off work, spend money on gas and wear and tear on a vehicle, pay for hospital food, hospital co-pays, doctor co-pays, prescription co-pays, find someone to take care of siblings, pets, homes, etc. We were also very lucky that Duncan didn't get sick much, when the kids have a central line (catheter or port), they often get admitted to the hospital when they have a fever. We did have some emergency room visits (plus those co-pays), but only stayed once. I know, we've got so many needy right now, but maybe later if you're so inclined. I'm just trying to spread the word.

We went to a drive through animal park after Christmas, the boys had a blast throwing food pellets out the window! We haven't touched the videotape yet though, I'll get photos from birthday or something posted soon. School is finally back in and we are having an extremely hard time getting up in the morning. Collin's birthday is coming soon, but somehow I don't think my terrible three is magically going to disappear overnight. :o)

Matthew is in remission! But I believe they are still looking for a donor.
Give blood - they're calling me, so they must be low!

Wednesday, December 22, 2004 10:58 AM CST

I should have posted sooner - a belated Happy Birthday to Duncan! It's hard to believe he's 6 now, but it's great that we've had so many happy birthdays to celebrate. With the birthday party over, the pressure is off to open presents and find out whether he will get what he's been wanting. Hopefully there will still be a few pleasant surprises under the tree.

We went bowling once again for his party, this one his first real mixed boys and girls party - and I must say, the girls did a great job! Maybe we'll have to have another bowling party toward the end of the school year. There's been a definite shift in age, as action figures and their accessories outnumbered any other gift. It probably helped that he chose Rescue Hero invitations and cake!

The Children's (Medical Center) Christmas party (for Cancer and Blood Disorder patients) was Monday, and life has finally slowed down now. Duncan and Collin started fighting as soon as we got in line to get in, but once we were inside I have to say they waited very patiently for Santa and his workshop. A nice break for Mama, as we have had quite a challenge with Collin lately, but that's another story that hasn't played out yet.

Today I am watching it snow as I write this, and most of you know we don't get White Christmases! I wonder if it isn't more than the weather forecasters expected, for I was led to believe there wouldn't be much. The roads are keeping it melted, but it's very pretty on the grass and trees right now. There's always the possibility it won't melt before Saturday, but that's just not how things work here. I think I'm getting drug outside to make a snowman later, and then I'm coming back in for some beans and cornbread and a fire in the fireplace that gets used twice a year!

I have a Christmas wish for someone else today - Matthew, has relapsed, and had finished treatment just two months before Duncan. They had almost made it to a year, which is not safe, but the odds get better I believe. (Of course this brings all my fears up to the surface since the boys are so close in dates!) I wish for them to find a match, if not his brother, then hopefully there will be someone out there on the registry. If you can take the time to join the registry, or perhaps sponsor someone else for Christmas, it could change someone's life!

I don't know if I will update again before next year, so Happy New Year! I hope you have an even better 2005.
Vicki

Friday, December 10, 2004 11:07 AM CST

Happy Holidays to everyone! Our tree is up, most of the presents wrapped, and Santa has been visited. Now if Duncan can make it to his birthday without exploding! LOL It is just eating him up this year to have to wait for the surprises of finding out what he's getting for his birthday and Christmas.

Everything is going pretty well here. Duncan goes for counts next week and the dreaded annual after that - shots this time! Eeek! I'm considering asking for a hearing exam as well - although I suspect it's just stubborness, I sure am getting tired of repeating myself.

Things are busy with all the festivities, open houses, parties, etc. but I can't think of a lot of news. I would like to share an appeal for support from someone I think a lot of. Although I hate to take away from anyone possibly giving to the Leukemia & Lymphoma Society, this is a very important project to continue producing guidebooks for families going through a cancer diagnosis. Whenever someone joins the ALL support list, the first thing everyone says is get this book!

Thanks for reading,
Vicki

***************************************

Hi everybody,

I'd like to introduce Childhood Cancer Guides--a 501(c)(3) charitable organization whose mission is to provide educational and emotional support to families of children with cancer. http://www.childhoodcancerguides.org

Cathie Woodman MD (parent of a brain tumor survivor) and I (parent of a leukemia survivor) are among the founding members. Our tiny nonprofit is attempting to keep four books in print that previously were a charitable operation of a small publishing company (you can read a little about that history at http://www.childhoodcancerguides.org/abt_history.html ). The four books are:

Childhood Leukemia: A Guide for Families, Friends, and Caregivers, 3rd edition
Childhood Cancer: A Guide to Solid Tumor Cancers, 2nd edition
Childhood Brain & Spinal Cord Tumors: A Guide for Families, Friends, and Caregivers
Childhood Cancer Survivors: A Practical Guide to Your Future

I've always been touched at how many people worked so hard behind the scenes to create, produce, distribute, and support the four books. Our "market" is too small for them to be self supporting, but we hope that with no overhead and the ability to accept donations and write grants, we can continue to update them and keep them in print.

Our organization is part of a larger community of people who love someone who has or had childhood cancer. Strong bonds of caring, shared experience,
and support tie our group together. Woven throughout the text of the four books are the stories of more than 400 parents, children with cancer, and survivors. More than 150 health care professionals well-known pediatric oncologists, nurse practitioners, psychologists, educators reviewed and improved our books. It's a community that none of us wanted to join; but its a wonderful community.

Please visit our website to learn about our nonprofit, read excerpts from the books, discover helpful resources, and find ways you can help. Feel free to pass this on to other lists or individuals in the ped onc community.

Thank you for your friendship and support.

Happy holidays,

Nancy Keene

Saturday, November 27, 2004 8:35 PM CST

We hope all of our friends here had a Happy Thanksgiving! Our day was spent at Grandma's with restaurant-cooked turkey this year instead of me working all morning on it. Not that I mind, but I'm getting to the point that I don't miss it much either!

Halloween went well, Duncan has already picked out his costume for next year, but doesn't want to wait to get it! School is still going well, I am so happy with that. (He just told us our clock was an octagon!)

Duncan's labs were drawn this week at the doctor's office, but between his insistence on using cold spray and their lack of larger lancets, the blood clotted before they got counts. He's always had great platelets. So I don't have anything to report, but I think no news is good news, October was fine, his ANC was finally climbing.

The calendar that Duncan is in for Team in Training is fabulous! There is no web site, but the email is: carefreemoments@yahoo.com. Our local group will have a pancake breakfast in honor of his birthday soon - he's almost six now!

Friday, October 29, 2004 12:16 AM CDT

There just hasn't been a lot to say about Duncan, which is always great news. It looks like his white count and ANC are finally starting to climb a bit and he is truly considered to be like any healthy almost six year-old. No flu shot required this year, which he's glad about.

Duncan is enjoying school and his classmates seem to be enjoying having him there. He's progressing quickly, he's going to be reading before we know it. We've had the tooth fairy come four times now! Duncan will be Spiderman for Halloween, and Collin has agreed to be a bird (it was a snake at first and I was just at a loss for how to do that).

Duncan is also 'Mr. June' in the honored hero calendar put together by two ladies from the TNT cycling team. He will be signing copies at the Spring season kickoff on Sunday! I'd better get some film for my camera.

As for the rest of us, I enjoyed my weekend in San Francisco to do the half marathon of the Nike event. The boys managed fine without me, and Mike did some rearranging/straightening, so that's a good thing. I'll continue with TNT, probably going along to Oklahoma City, but the big goal is Anchorage with the Summer team.

Tuesday, September 21, 2004 9:32 PM CDT

In the last month or so I've been hearing about long term effects for our little cancer survivors mostly from chemo or radiation. Now these are not just ALL kids, I honestly don't know what all the names mean - medulloblastoma, Wilm's tumor, Hodgkin's, other sarcomas. But I get angry hearing about the "gifts" that come with the cure - infertility, chronic pain, learning difficulties. At the same time I hope I am not being naive in thinking Duncan 'only had ALL,' 'didn't have certain chemos,' and that we can escape most of the problems.

But this is actually a good day today because today marks three years that Duncan has officially been in remission! We didn't do anything to celebrate this anniversary, but it's wonderful all the same. Duncan also had the last of his Bactrim this weekend - hooray! No more meds - that is, no more meds once he finishes the round of antibiotics he's on for a sinus infection. I might toss half our medicine spoons in the trash just for fun. LOL

I can't remember if I mentioned it, but Duncan had his photo taken for a fundraising calendar of Team in Training Honored Heroes. I don't know for sure that he is in it, but I think he is. If you live nearby I can let you know where to find it next month. I have no idea if anyone will ship them, but I know there will be a few calendars under some Christmas trees in our family.

Tuesday, September 21, 2004 9:32 PM CDT

Tuesday, September 14, 2004 8:47 AM CDT

Things are going well here. Duncan has been enjoying school, although he caught his first bug of the year and hasn't gone the last two days. He acts just fine, but has been coughing and sniffling since Saturday. My mother keeps telling me there's whooping cough going around, but this is not like the "whooping cough or pneumonia" I had a couple of years ago. I don't think either of us slept well last night with his coughing though, so maybe I will take him in to the pediatrician for a look.

Other than that, things really are well here. He's also in the process of losing an upper tooth - I'm looking forward to seeing that smile. He's still in the process of learning names in his class (takes me a while too), but there are a few he mentions on a regular basis. One day last week we were driving to school when he shouts out, "It's a zebra!" I thought he was just making it up, but looked over my shoulder quickly and sure enough, there it was.

We went to a festival on Sunday and rode lots of rides - I thought Duncan and Mike were going to be stranded at the top of the ferris wheel, I don't think the operator quite knew what he was doing or that his ride wasn't working correctly!

The rest of us are well - Mike has recovered from his surgery, Collin is enjoying preschool, and I am still training with TNT, tagging along with some other alums to the Nike Half next month. I guess I'll rework my tribute ribbons to fit my shirt better (I think the photo is still here, or definitely on pledgepage). If you have any additions to request, just let me know (first name, age, status: on treatment, finished treatment, bmt, relapse protocol, angel).

Tuesday, September 14, 2004 8:47 AM CDT

Wednesday, August 25, 2004 10:04 PM CDT

Well, Mike's gallbladder came out alright, and he is healing. Got a little irritated being at home with the boys all day... Welcome to my world dear, but I did cut him some slack as he had been through surgery. ;o)

Duncan's blood work continues to be okay. Not great, but adequate. His red and platelets have never really changed much since diagnosis, but his ANC (infection fighting cells) has been bouncing back and forth between low-ish and high-ish (high for a kid on chemo, I'm not sure yet what normal should be). But he's got a lot of monocytes, so it's okay. Next month we get to stop being vigilant about chicken pox, premedicating dental cleanings, and we can stop the Bactrim - YES!! It's the exception rather than the rule that I remember to get all six doses of that in every weekend, even with a beeping reminder.

He's had a couple of orientation days at school now and we are all excited about kindergarten starting. I really am excited for all the things he will be learning, but I have to admit I'm also eager for Collin to get started so that I will have at least a few hours a week to get stuff done and recover my sanity. I think Duncan will do great and hopefully will make lots of new friends this year. The big challenge will just be to get him up and there on time!

Tuesday, August 17, 2004 11:00 AM CDT

Duncan continues to do well, we are psyching up for kindergarten. He had an appointment today for counts, etc. but we are having to postpone it.

The news today is that Mike (dad) had a gallstone attack this weekend and will soon be having his gallbladder out. It should be a day surgery, and home by supper (not that he'll be eating...).

More news later.

Thursday, July 22, 2004 4:42 PM CDT

We got back from our vacation this past weekend, and even though I can't seem to get going, the boys are enjoying being home. They had a great time throwing rocks in the lake, throwing rocks in the rivers, exploring, and generally running around. We took them down an alpine slide three times one afternoon before it closed, then had to promise we'd come back the next day and ride some more. (Shhh - Don't tell Collin that Mama went once by herself in the fast lane!)

Duncan tried his first finger stick with his numbing cream the other day - we had done the last one with cold spray, which he decided was a pretty good idea. Well, it worked alright, although I ended up putting it on four times before we went to the pediatrician's office. Then when the nurse did the stick his finger was so pruny the blood just wanted to run up the channels, so to speak, rather than drop. Okay, I guess that's a little graphic, but that's how it went. So it just took a little while. I was trying to avoid the drive and visit to the hospital...

I can't really think of any other news. School starts here in just a few weeks, hard to believe kindergarten is so close. We're just trying to take it easy the rest of our summer.

August 5 -
One more thing - we are selling these cute bears this year to raise money for Light the Night. Let me know if you want one (if you are in delivery distance or heck, if you want to pay postage I'll mail them too! LOL).

Monday, June 28, 2004 4:26 PM CDT

Not a lot of news here, I did get the results of Duncan's neuropsych testing last week and he's doing great. No major red flags, although he does seem to have some attention "difficulties." Well, yes. We'll see what comes of that.

The preparation for Light the Night is starting up. Hard to believe it's our fourth year, but that will mean three years in remission!

Swim lessons are over and the summer activity is slowing down, thank goodness. Perhaps the boys and Mike will drive the tractor in the 4th of July parade, on the 3rd.

I hope everyone is having a safe and happy (and drier than we are) summer!

Friday, June 11, 2004 9:33 AM CDT

Many of us parents use the CaringBridge journal space to talk about what it's like to go through your child having cancer. Sometimes it can get pretty messy. I've shared a bit, but it doesn't always come across the right way - it's a hard thing to put down on 'paper.' I have heard your child having leukemia compared to suddenly having an elephant in your living room - you certainly can't ignore it, you have to maneuver around it, it even follows you around, you can't get away from it, etc. - I hope you get the idea. Eventually treatment is over and time goes on and the elephant in your living room becomes more like a mouse under the refrigerator - still there, but out of the way, you don't think about it too often.

We usually refer to our "new normal" throughout treatment - of course life will never be the same as it was before, can it ever really be normal? I will always worry that it will come back, I will always worry that the treatment will cause something else, as we get into formal schooling I will wonder if he's doing as well as he would have before.

And yet, we do have a "normal" life, beyond going for monthly blood counts and catching up on the immunizations he hasn't had the past few years and going to events where my nearly five-and-a-half year old is told by grown-ups that he's a hero and preparing for 'the cancer talk' the way some parents would prepare for 'the sex talk.' We've tried to keep things as normal as possible all along, although we/I haven't always succeeded (all first borns have this many toys, right?), I think we've done pretty well. (We now are having more trouble with our second born, so I guess we've done something right?!)

Anyway, here's an article in the Wall Street Journal which talks about problems after treatment. We have not had these kinds of problems, Duncan has only had the one treatment protocol - no radiation. For him so far it just seems to be a bump in the road - no other health issues. I just wanted to share for anyone who knows anyone else going through childhood cancer, to show how it can change the whole family. WSJ article

Don't worry, we do still talk to our neighbors, we still have friends and family who visit and we visit. Duncan doesn't talk about it just because he doesn't really know about it - it's just normal life for him, although he'll be glad to show you his port scar. I think I have actually learned more patience through our ordeal rather than less. I have learned that you never know what is going on in someone else's life.

I hope everyone is well - hug your babies.

Thursday, May 20, 2004 9:16 AM CDT

At the port flush on Tuesday the nurse couldn't get a draw and Duncan complained of pain when she pushed fluid in. He also bruised at what I suspect is the upper end of the line. So tomorrow at noon we are going for surgery to remove the port. Only two months off treatment, I was planning on a little more time, but it sounds like the line is failing. It served us well for all of his treatment, so we will consider ourselves lucky we don't have to consider replacing it, but will now be line-free. Which means less visits to clinic, hurray! But means more finger sticks for Duncan, boo hiss!

It's supposed to be a 5-minute procedure - with probably hours of wait time and no food all morning I'm sure. More after...

Friday, May 21, 2004 10:14 PM CDT

It's all over - a couple hours delay of course, waiting for an anesthesiologist. Duncan was very good up until it came time for medication, but we managed it down and eventually the surgery went on.

Once the anesthesia really wore off he was back to normal, not complaining at all. He still has his port - in a jar! And wants to show it to everyone.

Monday, May 10, 2004 2:48 PM CDT

Well, I should talk about Duncan first, but there's not much to report. His second loose tooth is ready to come out, but the permanent tooth is kind of coming in behind rather than pushing it up. Mama and Daddy may have to take it out ourselves. He is doing great, and has been very good for us lately, other than being a 5-year-old boy of course! School is almost over, and as usual I am wondering what to do all summer.

Our trip to Vancouver for the marathon went pretty well. Every single flight plus one of our ferry trips were delayed, but we managed to make it. Duncan got to cross the finish line with me, and stood there in front of the lady giving out medals like - okay, put one on me now. We got him a 26.2 pin from TNT, so he has his own medal. He won't take mine.

If I think of more I'll come back later, but for now I have so much catching up to do. I think the kids are glad to be home, even though they seem to enjoy being in new places, the travelling was a lot harder this time.

May 17 - Duncan's second loose tooth finally came out last night. He's been playing 'ferry boat' - loading all sorts of cars onto Collin's main street garage and pushing it across the floor to unload. New photos.

Wednesday, April 21, 2004 12:52 AM CDT

Well, the big party is over, and a good time was had by all. We had a combination bounce house with a climb and slide and a big climb and slide/fall down thing big enough for grown-ups (and a few of us did give it a try). There were balloon hats and some magic tricks, and then what a surprise - Buzz Lightyear showed up! We had a luau theme complete with plastic leis for everyone. Our good friend Cheryl made a fabulous beach scene cake for our aloha to chemo, and we all ate barbecue (didn't think poi would go over with the five-year-old set - or my 30-something husband either). Plus a sun pi�ata with candy.

There was another routine clinic visit yesterday - hmmm, and I've just realized Duncan still didn't get his big prize for going off treatment, AND they didn't call with counts. Okay, we're getting all slack now. LOL

Life has been so busy around here, but that's good. Mike's Dad came to visit for a week (and the big party). He helped me finish the new swingset and played 'higher faster' with Duncan till one of his arms fell off (I'll get that in the mail to you this week, Pa - just kidding everyone!). I was in the Runaway Train Half-Marathon with many of my teammates on Saturday. I finished the half in what some people will do a whole marathon, but that's okay, it was good time for me. Next week some of our team does Oklahoma City, and then Vancouver!

Duncan's days should be pretty routine for a while now - about a month of school to go, and no plans for summer activities yet. Swim lessons probably, and he does have another loose tooth. He says he's interested in basketball, that's kind of a surprise for us, but we'll give it a shot. I'll try to continue updating periodically, there's still the question of when the port will come out, or when Duncan will let it happen...

Tuesday, March 16, 2004 6:48 PM CST

It is finished. No more pills! Last 6MP went down last night and we had a routine clinic visit today. Kind of anticlimactic other than us handing out party invitations. At the end I found out he is supposed to get a big prize from child life, but apparently they weren't expecting us so they needed to go and get it and did we just want to wait until next time? Okay, so next time we'll find out about the big prize. Guess I'll remind someone when we first get there. ;o)

So the big off treatment party will be April 18 here in the big city. Other than that, life is pretty normal for us. Hope it's the same for all of you!

We have a friend in need of encouragement after a relapse. Please visit: Spencer Rocket

March 21 - I feel like I should write more, but there's not much to say. Life hasn't changed a whole lot, but it's nice not to have to worry about whether he's had that pill every night. We're still going to have our monthly clinic visits for the next year, and of course I'll never stop worrying.

But for now we're looking forward to the party! Let us know if you can come.

Tuesday, February 24, 2004 4:21 PM CST

As usual there's not a lot of news where Duncan's concerned. His blood counts were good last week so we're clear to finish our last few weeks of chemo. Things won't change a whole lot as far as going in to clinic for counts and port flush once a month. It doesn't seem real somehow that we're almost done.

I still haven't made a lot of progress in planning his off treatment party, there was Dad's funeral, and Duncan's preschool we were planning on continuing with for kindergarten has too many students next year. But I'm back on task, making a few phone calls to find a place to host us.

Everyone is well and we don't have any big events coming up. I am participating in the Cowtown Marathon this weekend, doing the shortest third of the marathon relay. I will put a link/photo on my pledgepage site if there are any.

Check out the links above, make some time to donate blood this weekend, and let me know if you're willing to "Be Brave... Go Bald," I'll help sponsor.

Thursday, February 5, 2004 10:01 PM CST

My dad, Duncan's Grandpa Gerlich, passed away peacefully this afternoon. He was in an advanced stage of Alzheimer's and had been in a hospital or nursing home since June, so instead of mourning we are trying to rejoice that he is well again and in the arms of family. He was 75.

Vigil & Rosary Sunday 7 pm
Jeter & Son Funeral Home on Illinois

Funeral Monday 11 am
St. Elizabeth Catholic Church on Hampton

Interment Monday 2 pm
St. Mary's Cemetary in West

Wednesday, January 28, 2004 11:20 AM CST

I had been waiting until our clinic visit yesterday to update, but I must say WOW! I've included a link to Kendrie's page - Kendrie's mom has put links to 101 sites (mostly CaringBridge pages like this one) of kids like Duncan, fighting their battles with cancer. When I figure out how to put another line under the link I'll explain it is in the January 19 and 25 journals. Kristie's efforts have proved very fruitful. Thanks to all those who left pins on our map and notes in the guestbook! One day I will get around to sending emails to all - probably when we are all done!

Yes, we confirmed yesterday that we anticipate our last pill will be given on March 15! After that we continue the Bactrim for six months and continue to have monthly blood counts done for a year, then tapering off. It actually seems kind of anti-climactic. Just stop pills one day, but show up back in clinic the next month. So going off treatment won't be a lot different, at least the first year, other than not having to take along prescription bottles when we go on vacation. And not worrying about whether I remembered his pills the night before. Okay, so it's a big change!

We are planning on commemorating this big change with a big party, but I'm just not sure when yet. I have all sorts of ideas, the problem right now is getting a venue set up. Where can we go with a fair amount of parking, preferably a grassy area also where we can set up a bounce house, slide, etc., access to electricity and potties, and either a spot to grill or a stove? Last resort I suppose is our house, but I'm concerned about the parking and potty issue. ;oP Any ideas are most welcome!

Catching up on the last month, the dog next door bit Duncan in the face again. It's not as bad as it sounds, I just feel bad for Duncan that he's going to have these scars. We feel it was probably started by him, not that he was being mean to the dog, on the contrary we suspect him of trying to hug the dog. Once again, I was looking at Collin and totally missed it, but we were able to go to the ped's office this time and no stitches.

We still haven't made a definite decision about when to have Duncan's port taken out. The oncologist said typically anytime from end of treatment to six months off. I have been saying to keep it because he prefers port access to finger sticks, but he's had a couple of not so great accesses lately, then yesterday we nearly had to give TPA - a 'clotbuster' to get his port to work properly. Sigh. Still, we'll try to talk to him about it and see what he thinks.

No big plans coming up for our family, I'm just trying to keep up with TNT and make the party plans. I hope this finds everyone well.

Vicki

Wednesday, December 31, 2003 11:05 AM CST

The last scheduled spinal tap went alright yesterday. It seems like very few of them go really normally, but that's probably an illusion because it's been so long inbetween them now (as compared to every three weeks in the beginning). The nurse had to run out for more sedative, and Duncan still wiggled around, the respiratory therapist and I had to hold him down. Duncan threw up fluid afterward, the first time ever after sedation, but was only concerned that we clean it up for him.

Other than all that, the spinal fluid looked clear. I will probably call and see if I can get the official word. The kids who are enrolled on the study have a final tap without chemo and a bone marrow aspirate at the end of the treatment period, but we will most likely skip this with Duncan. That's why I call this the last scheduled tap. Unless we have reason to believe a relapse, he will not have any more. Yahoo!

He's not wanting to take his steroid pills. Whee. I hope he gets over it, or as the steroids kick in he might bite me as I'm forcing them down!

Since I wrote last we've had his birthday, his first tooth lost, and Christmas. Overall it's been a good month, although five isn't any better than four so far. The house supply of Rescue Heroes has about doubled in the last month. Next comes Collin's birthday, but all he says when we ask him about a party is "cake" - the most important part!

Duncan has 10 more weeks of treatment after this one. It's not sinking in yet, but I will be back here certainly telling you all about it.

***********
January 3 - I just found out about a relapse on my support list(serv) - visit Julianna's page at http://www.caringbridge.org/canada/julianna/ and leave a note of encouragement. Julianna relapsed in the CNS (central nervous system) just a few months into treatment, which means harsher chemo, and probably radiation.

What a sock in the gut for all of us parents as her relapse was detected at a routine spinal tap - no symptoms. You just never know when this disease will rear it's ugly head again.

Wednesday, December 10, 2003 5:36 PM CST

It is pretty much life as usual in our house lately. I am trying to figure out a schedule to do my training for TNT. We are getting ready for Duncan's birthday party this weekend. And of course he's asking about once a day if it's Christmas yet. Yes, we do have advent calendars, and I finally made a paper calendar for him so we can 'X' off the days. That seems to have helped. The holly on the sides of this page look kind of funny with the beach picture, but I think it's a good picture. I'll look for another one later.

Duncan had his monthly counts and port flush and the final spinal (ha ha) is scheduled for the last week of the year. We will start 2004 on steroids, but no more IV chemo! Please keep us in your prayers whenever you can though because the end of treatment does not mean Duncan is free and clear of the leukemia.

Speaking of prayers, I thought I would try to occasionally list a web site or two of others on my support list. Marcus is a boy in Canada who has had a hard time from the beginning and has relapsed about three months after a bone marrow transplant. Visit them at: http://www.caringbridge.org/mn/markie/.

Wednesday, November 12, 2003 11:37 AM CST

Duncan had a great visit with his Papa Neus, they drew lots of pictures and made many voyages on Duncan's spaceship in the front yard. We had a clinic visit which went fine and counts are good. I can't think of a lot of news, at least where he's concerned. I am trying to pry more details out of him about how he wants his birthday party to be, it will be here before I know it. I have no idea what Thanksgiving will be like for us, my dad is currently in hospital, but will be going back to a nursing home in Garland and I'm sure will still be there.

For me, I've signed up with Team in Training! I am going to walk/run the half-marathon in Vancouver in May. Duncan should be well off-treatment by then and I can take him across the finish line and celebrate. I have been setting up a pledge site if anyone would like to help (notice I didn't bug you about Light the Night this year? LOL). I guess I'll put it above so it will be up front for a while, but I'm sure you'll get updates here.

Friday, October 24, 2003 10:01 AM CDT

We just got back last night from our Make-A-Wish trip to Disneyworld. After some very late paper-signing our remaining wish-granter came with our info, etc. Monday night before we left on Saturday and it finally started to seem real.

After just a few more surprises (oh, we do get a rental car!) we made it to Give Kids the World Village and eventually settled in there. GKTW was great, if you're feeling in a charitable mood I would suggest a donation, they really made this trip special, and even possible for a lot of families. (Perkins also is a big sponsor of GKTW, I believe they donate a lot of the food, and they have collection cups in the restaurants.) They gave us tickets to all the parks around, served us breakfast and dinner, and even had sandwiches or frozen dinners for lunch. There is an ice cream parlor open from 7:30 am to 9 pm, there is an arcade open all day, mini-golf, swimming, a movie twice a day, a play area and a carousel. It was hard to get Duncan to leave there each day to go to the real Disneyworld! They even provided for a lot of our needs in the villa. Little gifts each day for the kids, and a portrait with Mickey and Minnie. Just incredible! Between that and having the guest assistance pass at the parks, we will have to send the kids to a deprogrammer now that we're back to real life.

So we had a great time, didn't get the limo ride out to dinner one night like our wishgranter had said, but we were too pooped to party any more after dark. We did Magic Kingdom, MGM, Epcot (just barely), Islands of Adventure, Animal Kingdom, and Magic Kingdom some more. Many over Duncan's protests that he wanted to stay at the 'hotel.' 'No you don't, kid, come on, let's go Disney!' LOL We should have pictures with Mickey, Minnie, Goofy, Pluto, Eeyore, Buzz Lightyear (which we might have to put on the Christmas list this year), Pinocchio, Timon?, and some others. I think we saw Donald Duck, but I can't remember. And I took a pic with Mary Poppins. We didn't do a whole lot at some of the parks b/c the boys weren't quite big enough, but we still found plenty to do, and couldn't go all day every day with them anyway. You know the song now, I need a vacation from my vacation. But they did pretty well, actually getting better as the week went on. I'll go find our Mickey picture and scan it in later.

Next week Papa comes to visit and we have a simple port flush at clinic after that. Watch for pictures! Have a great Halloween everyone, we'll see if the Captain Feathersword costume makes it out of the closet...

Friday, October 24, 2003 10:01 AM CDT

We just got back last night from our Make-A-Wish trip to Disneyworld. After some very late paper-signing our remaining wish-granter came with our info, etc. Monday night before we left on Saturday and it finally started to seem real.

After just a few more surprises (oh, we do get a rental car!) we made it to Give Kids the World Village and eventually settled in there. GKTW was great, if you're feeling in a charitable mood I would suggest a donation, they really made this trip special, and even possible for a lot of families. They gave us tickets to all the parks around, served us breakfast and dinner, and even had sandwiches or frozen dinners for lunch. There is an ice cream parlor open from 7:30 am to 9 pm, there is an arcade open all day, mini-golf, swimming, a movie twice a day, a play area and a carousel. It was hard to get Duncan to leave there each day to go to the real Disneyworld! They even provided for a lot of our needs in the villa. Little gifts each day for the kids, and a portrait with Mickey and Minnie. Just incredible! Between that and having the guest assistance pass at the parks, we will have to send the kids to a deprogrammer now that we're back to real life.

So we had a great time, didn't get the limo ride out to dinner one night like our wishgranter had said, but we were too pooped to party any more after dark. We did Magic Kingdom, MGM, Epcot (just barely), Islands of Adventure, Animal Kingdom, and Magic Kingdom some more. Many over Duncan's protests that he wanted to stay at the 'hotel.' 'No you don't, kid, come on, let's go Disney!' LOL We should have pictures with Mickey, Minnie, Goofy, Pluto, Eeyore, Buzz Lightyear (which we might have to put on the Christmas list this year), Pinocchio, the meerkat from Lion King (sorry, never watched it), and some others. Can't remember right now if we ever caught Donald Duck. And I took a pic with Mary Poppins. We didn't do a whole lot at some of the parks b/c the boys weren't quite big enough, but we still found plenty to do, and couldn't go all day every day with them anyway. You know the song now, I need a vacation from my vacation. But they did pretty well, actually getting better as the week went on. I'll go find our Mickey picture and scan it in later.

Next week Papa comes to visit and we have a simple port flush at clinic after that. Watch for pictures! Have a great Halloween everyone.

Tuesday, October 7, 2003 8:14 PM CDT

What a week it's been! The good news is that spinal tap #15 is over and done. The boys have both been coughing on and off all week. The pediatrician said on Friday that Collin had croup. Duncan's NP said today he probably has had a viral something, but his coughing was most likely post-nasal drip irritation. Boy I know what that's like, my allergies are going about 75% right now as well, unless I've really got the croup too.

So we're supposed to keep an eye on him. He woke up from a nap pretty grumpy, and he hasn't even had a steroid yet. Told me a little while ago that he doesn't like to eat. That'll change.

I found out on Saturday morning that they boys' godmother, my cousin, had passed away overnight from an infection while on chemo. She leaves three children and a husband who will miss her, please keep them in their prayers. It's an awful reality check for us about keeping a watchful eye on our own little chemo patient.

Let's not forget the most exciting event of our week. I was about to call everyone into the van to run errands on Saturday when Collin slipped off our pavestone retaining wall - 2 to 3 levels high, maybe 18 inches off the ground - and caught his chin on the edge I suppose. A trip to the local ER, a trip back to drop Duncan off with a friend, back to the ER, and then to a different ER later and his 2.5 cm tear is glued shut. Pretty neat stuff, no stitch holes, no bandages, no antibiotics, and of course the best part was no stitches.

Now it's steroid week and looking forward to Disneyworld. Our next tap should be at the end of the year. Our next and final tap that is!

Wednesday, September 10, 2003 1:36 PM CDT

Duncan started preschool last week. He seems to like it, but he doesn't tell us much about it yet, funny how early that starts. I'm sure he's still learning names, maybe we'll hear more as he makes friends to tell us about. I'm happy with the teachers, they really seem to be organized, we actually have a calendar for the month with the topics they are covering. If all goes well, maybe he will stay there for kindergarten, and Collin can go into 3 y.o. preschool next year.

We had a clinic visit yesterday, just labs and a port flush. They sent a resident in to practice on us. Well, maybe not, but he was asking some silly questions. "When is the last time he got shots?" Shots? I'm sitting there thinking he gets his port accessed every month, what do you mean, the last time he got asparaginase? Then he clarified "vaccines." I hate it when doctors dumb things down so much. Just assume I know a little bit about my child's treatment after two years. So rather than tell the resident I didn't have any questions, then start in on the oncologist when he showed up, I didn't ask any of the questions that have been floating around lately about his protocol, etc. Nothing about Duncan specifically, just curiousity questions.

Duncan's next tap is in four weeks.

Tuesday, August 26, 2003 10:33 AM CDT

There's really not much new to report on. Yesterday was the second anniversary of the start of treatment, which doesn't bother me so much as the thought of going off treatment. As much as you wish this whole nightmare had never started, chemo becomes a crutch for some of us. You become afraid the disease will come back without the chemo. I know I can't live my life in fear, but I read an article recently in which the doctors at St. Jude's now consider 10 years of event-free survival necessary to declare a patient cured. It is my greatest hope that Duncan will say "I had acute lympho what?" in another eight years, but my greatest fear that he will relapse and have to go through a harder treatment protocol.

On a happier note, he and Collin are both doing well. They've done a bit of a role reversal as it's Collin's behavior driving me nuts more these days. He's got a thing with water lately. Sunday I left them in the bathtub and came back to find the dirty clothes from the hamper in the water. Yesterday he came in and dumped the water from my bedside cup in the bed, and later repeated the clothes in the tub trick in my bathroom, but added throwing them back out on the carpet. Sigh. Me keeping him home from mother's day out this year will either be a good thing or a very bad thing. They got haircuts and Duncan got new shoes last week (size 13!) so we are ready for preschool to start.

Duncan has another tap early October and we are supposed to go to Disneyworld for his Make-A-Wish trip this fall. The last tap should be at the end of the year and we will probably have his port taken out around then as well. It could be done at the same time as his tap in the OR, but at this point I don't want to let go of being able to watch over him during a tap. We haven't made any progress on party-planning - when or where or what. So anytime between March and a year from then - or more?...

Tuesday, August 26, 2003 10:33 AM CDT

There's really not much new to report on. Yesterday was the second anniversary of the start of treatment, which doesn't bother me so much as the thought of going off treatment. As much as you wish this whole nightmare had never started, chemo becomes a crutch for some of us. You become afraid the disease will come back without the chemo. I know I can't live my life in fear, but I read an article recently in which the doctors at St. Jude's now consider 10 years of event-free survival necessary to declare a patient cured. It is my greatest hope that Duncan will say "I had acute lympho what?" in another eight years, but my greatest fear that he will relapse and have to go through a harder treatment protocol.

On a happier note, he and Collin are both doing well. They've done a bit of a role reversal as it's Collin's behavior driving me nuts more these days. He's got a thing with water lately. Sunday I left them in the bathtub and came back to find the dirty clothes from the hamper in the water. Yesterday he came in and dumped the water from my bedside cup in the bed, and later repeated the clothes in the tub trick in my bathroom, but added throwing them back out on the carpet. Sigh. Me keeping him home from mother's day out this year will either be a good thing or a very bad thing.

Duncan has another tap early October and we are supposed to go to Disneyworld for his Make-A-Wish trip this fall. The last tap should be at the end of the year and we will probably have his port taken out around then as well. It could be done at the same time as his tap in the OR, but at this point I don't want to let go of being able to watch over him during a tap. We haven't made any progress on party-planning - when or where or what. So anytime between March and a year from then - or more?...

Monday, August 4, 2003 10:39 AM CDT

No news on Duncan healthwise. He continues to do great, I can't believe we're counting down months to go. Starting to think about a party...

We almost got him wiggled out yesterday. We bought tickets for the 12:00 Wiggles concert a few months ago, then Make-A-Wish called on Friday and said the theater had donated a box, did we want to come sit in the luxury suite at the 4:00 show? I think we all had a great time at the first show and at the second show, although part of it was just spent goofing around in the lounge area. I stayed up all night Saturday sewing him a pirate costume, even though I wasn't sure he would wear it. Well, I think it's going to be the next seagull costume and he will wear it around the house enough to justify my time spent. He got lots of good comments yesterday. I didn't have time to fit it for size, just made it according to the pattern, so once I hem it up a bit and finish the details I will take a picture.

We also got to go to the Rangers game on Saturday night for Leukemia & Lymphoma Society's night at the Ballpark. A group of survivors got to go out on the field - just by the dugout really - for a check presentation from Jeff Zimmerman, one of the players. Unfortunately, we didn't make the news since it was also induction to the Rangers' Hall of Fame for Nolan Ryan and a few others and the only thing about cancer we heard on the news was that former manager Johnny Oates had been battling it.

My dad is doing pretty well, they are sitting him up, and he's talking a few words at a time if you ask him questions, but then sleeping the rest of the time. He's still in hospital, they call it a specialty hospital, but there is some talk of moving him soon - presumably a nursing home?

I've studied another affliction this past week first hand - labyrinthitis. Basically an inner ear infection that made my ears ring terribly and made me very dizzy for a couple days. I couldn't get into my doctor until after the weekend, so Mike ended up taking me to the urgent care. It was quite amusing, the doc-in-the-box said no, you don't have an ear infection (outer ear), I think it's neurological, then he left the room. Aaagh! It's a tumor! No, we didn't really do that, but leaving the room without explaining that wasn't the best thing he could have done. Then he told me I had a mild case, that there were people in the hospital on IV from the nausea and vomiting, but mine could get worse before I got better. Oh goody.

So we're having a quiet day at home to recover from everything. Duncan has discovered "Yellow Submarine," the animated Beatles movie. Lots of choruses of "we all live in a yellow submarine" around our house lately. And in the van. Over and over. Could be worse, right?

Wednesday, July 9, 2003 11:19 PM CDT

I don't really have anything new to say about Duncan. We went to a Team in Training function tonight - Duncan is an honored hero for the current Metro team. He does have a spinal, vincristine, and steroids next week, so that's always a bit of an anxious time. This is spinal tap number 14, only two more to go in October and December. I don't know how his little body can put up with it all, but he is thriving, being a typical 4 1/2 year old boy - in other words a big pain some days, but I'm grateful it's not the alternative.

My dad now has a trach tube in his throat and is still in ICU. He is more alert and getting more physical therapy, etc. He's still running a low-grade fever - my mom informed me on Friday that he has a MRSA (methycillin-resistant staphylococcus aureus) infection and I have stayed away for a while out of fear of bringing something home to Duncan. Dad will get a g-tube (directly into his stomach) sometime next week. I don't know if the doctor has changed her tune about him having to stay in a nursing home with skilled care.

Thursday, July 3, 2003 4:32 PM CDT

Well, my dad has been put on a ventilator at my mom's request (over the doctor's objections). I do not really know what comes next, we are just waiting at this point. The doctor is not positive about the outlook.

On a lighter note, Collin had his very first "surgery" the other day to remove the objects from his ears. After the ENT guessed they were rocks and two assistants and I tried unsuccessfully to hold Collin still, they scheduled sedation for him. They gave him some Versed and then gas and removed two black-eyed peas from his ears. Oh dear, I know exactly where those came from, they are in a bin of beans and pasta that he likes to scoop and pour. Everyone was so nice, they didn't know I was an old hand at this sort of stuff, but I don't think I'll ever get Collin to take medicine from me again.

Tuesday, July 1, 2003 10:02 AM CDT

We are back from our second "annual" week-long beach vacation! It was a great time. The boys enjoyed surf and sand and we all got some tan, in spite of applying sunblock religiously every day. Duncan is quite brown! I enjoyed some seafood, and Mike, well, I'm sure he enjoyed being away from work for a bit.

It's always something, though, that makes things less than perfect. My mom called to tell me that my dad had fallen and cracked two ribs and had gone to the hospital. There they had oversedated him to insert a chest tube and do a scan and then he got pneumonia. She insisted that we enjoy our vacation, but on the way home yesterday she called to tell me he had taken a turn for the worse. Since we were driving by Hobby as she told me this, I flew home and Mike continued with the boys. Dad is stable, although still in ICU.

Also Collin began to develop a fever yesterday morning and was not acting like himself. We decided it was probably an ear infection and would take him to the pediatrician as soon as we got home if he was still feverish. The pediatrician went to look in his ears and said 'let's get some of this wax out' but when he went to remove it found out it was not wax but some foreign objects Collin has apparently inserted. We are going to an ENT this afternoon. I can't wait to find out what they are, I have been racking my brain and have no idea where he would have gotten beads, but it's possible it's something he found this last week at the beach house, or just plain old rocks.

Hopefully I'll have some updates and new pictures later this week.

Thursday, June 12, 2003 11:31 AM CDT

I'm assuming my whole entry just got wiped out. I am so tired of fighting Collin off the computer, although it may just be Microsoft's fault. #$@%@!!

As you can see if you've been here before, I've updated the page a bit. Please put a dot on our guest map so I can show Duncan all the people around that are thinking of him.

I got a nasty surprise from clinic yesterday. I finally called to see what his counts were from our last visit three weeks ago. His ANC has been running around 1800 so I was prepared to talk about upping his chemo dose. I found out his ANC was only 342 and no one ever called me! Now I will give them half an excuse as we went on a different day than usual and didn't see our regular nurse or NP, but still! I should have kept Duncan home and off chemo for a week until counts were rechecked, but he went to mother's day out twice and an end of school party. No harm done this time however, I am amazed at how healthy and energetic he has been - what is he going to be like when he's off chemo?!

I took Duncan to art class the other day, and despite having two friends there he could sit with, he would have nothing to do with it. Wasn't upset about it, just didn't want to participate. He says he'll do it later - sure, we'll see.

Next week is a port flush, counts, and exam. The onc is going to hear about this little slipup of theirs. I wasn't too happy with the NP we saw last time anyway, I guess there isn't much advantage to changing days to accommodate your schedule.

We're also getting ready for the beach soon! That will probably be our next update. Have a great summer everyone!

Monday, May 19, 2003 5:59 PM CDT

No big news this time either. Still dealing with clinic being out of sorts sharing a space with another clinic, and went today instead of keeping him out of mother's day out tomorrow. Saturday a week ago Duncan threw up in bed, then had a fever an hour or so later. Mike ended up taking him in about 2:30am (I had gotten sick too), but all Duncan seemed to have was ear infections. Again.

I've got our summer schedule mostly worked out, hopefully not too busy this year, but the usual gym, plus swim lessons plus some art lessons. Should be fun. We're counting down to beach week too. We were going to go camping with two other families this past weekend, but between the tornadoes in OK lately (we were going to Turner Falls), and schedules, and one of the families being sick, we just stayed home. Did get some house cleaning done - isn't that exciting. Now next weekend is Memorial Day, so we may just end up throwing the tent in the yard so the boys can say they camped.

Monday, May 19, 2003 5:59 PM CDT

Wednesday, April 30, 2003 12:39 AM CDT

Everything is going relatively well at our house. Duncan had his spinal tap last Tuesday, and it went alright in spite of my growing fear about his growing awareness of what's going on. I thought this would be a faster appointment since I had his blood counts done the day before locally, but noone told me I also needed blood chemistry done. They gave me the impression this would not be a big delay, but our appointment ended up taking longer than ever. I asked to increase his sedation meds just a little and it was a textbook conscious sedation with him still calling to us periodically, but not having his oxygen levels "desat."

Of course, having a spinal means we also had a week of steroids, which is always stressful. It takes a couple of days to build up and by Saturday the frustration factor was pretty high. It peaked last night (we hope) with him crying about wanting his old bed back (it's been 6 months) and going to sleep in the playroom on a foam flip chair. Steroid pulses always make him grumpy, weepy, crave salty snacks and avoid baths more than anything (kind of like a rabid dog) and we're always glad when they are over.

Mike got spared by the recent layoffs, but it was enough of a concern that we are making sure we get every prescription refilled that we can. Nothing noteworthy coming up in the immediate future - always too much to do for someone without a six figure salary. A few of us got together and ordered tickets for the Wiggles concert when they come to town. Now I just hope the boys will still be interested when August rolls around. "School" will be out in just a few weeks, and it's warming up rapidly - what am I going to do with two active boys all summer?!

Sunday, April 20, 2003 3:45 PM CDT

Well, there's a little news, but not a lot of news since my last update. Duncan continues to do well, his ANC was still a little bit high the last CBC. We go in Monday for another CBC and hopefully (not that I want it, but it's good to be on schedule) on Tuesday the 4th to last (is that right? we'll have three after this one) spinal tap with chemo and week of steroids. So, think of us on Tuesday morning. Maybe this time will be uneventful. {:o/

Duncan has finally settled on Disney for his wish. We went from Make-A-Wish telling us they were not doing international wishes (and the Wiggles being out of the country at the time), through trying to come up with an alternate wish (how about the Grand Canyon train? how about Alaska Railways?) to the Wiggles US tour dates being posted and Duncan wanting to take take a train to the Wiggles (even though he hasn't watched the show in a few weeks), to him deciding to go to Disney. Our change of heart is supposed to be submitted next week, but we are asking to postpone until fall. As warm as it is getting here already, I'm sure it will be plenty hot and HUMID in Florida by the time we got there.

Duncan had three egg hunts this week and a gift and a basket from the Easter bunny today (basket courtesy of grandma, but low on candy, hooray! it had a soccer ball instead). The gift was a Rescue Heroes computer game. We weren't sure at first if he would get the hang of it, but he did, and what's even scarier is that Collin (age 2!) can do some of it as well.

Monday, March 31, 2003 6:10 PM CST

Well, it was blissfully quiet last week. No more fevers or emergencies. Duncan's one stitch came out on Wednesday and his lip looks great. He won't let me do a lot with it though. I tried putting some Mederma on it, but that stuff stinks very very much! I will just try to keep Vitamin E on it as much as I can.

The weather has gotten nice for the most part and the boys are wanting to be outside every afternoon. I'm wishing again for a fence and a playset, if only they had Make-A-Wish for care providers. The boys are wanting to go exploring in the trees in the front of our house, but there's also a lot of thorns and Collin's legs look terrible.

Collin's got a nasty cold, we think. Hopefully it's not just a matter of time before it turns into a sinus infection. Duncan seems to be just fine, but we will go for counts tomorrow so I would have had more to report if I had waited another day. We are going to try the lab in our pediatrician's building instead of driving to Dallas one morning - they have moved our clinic and cut back the hours drastically since it's a shared space.

Saturday, March 22, 2003 12:04 AM CST

Well, the adventure continues. Duncan let Collin and himself out the front door yesterday afternoon. We ended up at the neighbor's house, playing very nicely, when he started screaming - the dog had bit him on the face! We still are not sure what happened, it is a very sweet-natured dog. We tried to ask Duncan about it later and the most we could understand was that he might have stepped on the dog's foot while he was getting up, so I guess he would have been at the right height for a snap to turn into a bite.

Of course I got the boys in the van and took off. It was after 5, and the pediatrician was closed, so after talking it over with Mike on the cell phone, decided to go into Children's rather than an urgent care clinic. I wanted to get someone who could stitch it with a minimum of scarring if stitches were necessary, and we decided we might as well go to Children's for they could access his port if sedation was required.

At Children's we get bumped up the list and isolated from the huddled masses waiting in the ER, but we still had to wait a while for a room. They had to do one stitch on his upper lip, they numbed it pretty good, and it was pretty quick although he still got pretty upset when the needles came for the numbing and stitching. He got over it very quickly though and we went to the cafeteria for some pizza and a doughnut. It was actually a tiny bit quicker than when his port gets accessed, and at least it had nothing to do with leukemia.

I know ER visits are in my future anyway with two boys, but I really expected it to be something more up on the head from a fall. Now they have both gotten their first trauma visit under their belts. Sigh.

Sunday, March 16, 2003 8:25 PM CST

What a weekend! What a couple of weeks actually. Duncan finished his antibiotics just after Collin started his and then I started coughing, now Mike's getting sick. Saturday night Mike and I got to go to the symphony (oh, that was just last night, but it seems like days ago!), which was great, but when we got home Duncan had a fever. He'd had a low fever from the night before, but we watched it for a while and it went up to 102 so they told us to come in for counts. So, Duncan and I got to the ER about 1:30 this morning, stayed our usual four hours, got chest x-rays and a dose of Rocephin, and got home again about 6:15.

After about 3 1/2 hours of sleep I woke up this morning with a terrible ear ache, and we called our neighbor back over from the night before so Mike could drive me to the urgent care. (Happy anniversary to us!) I have an ear infection and bronchitis. I think it's a matter of time before Mike goes to the dr too. Of course it's spring break, so no mother's day out for me. But hopefully by next week when they go again I'll be able to enjoy it!

Duncan's ANC was 1870 last night, which means the increased chemo is doing a better job, but it could still be a little better. I guess it's hard to tell what's really going on since he's had some infections (which can alter counts). The verdict in the ER last night was that he probably just has the same thing the rest of us do. Maybe so, and maybe his immune system is just taking longer to fight it off. Seems to be the only explanation for the prolonged cough.

Our clinic has moved temporarily to a different floor and has reduced hours. I got a letter about this, but no end date or whether I need to check on our next appointment. If this is still going on in late April we would have to go two days in a row to have counts done the day before his next scheduled spinal tap. I may end up switching to a local lab for counts after all, but we can hope it's this one time only, can't we? I have no idea when the construction will be done, I believe they are adding six floors to the entire hospital, and they're not quite done with the first half.

The boys are doing well actually for all that's happened. Hopefully I can carry on with our normal schedule tomorrow and we can start scheduling some makeups for all the gym days we've already missed.

Wednesday, March 12, 2003 1:16 PM CST

Not much new concerning Duncan. His methotrexate was increased by one pill but we won't have counts done again for a few more weeks to see if it is making a difference. He seems to be getting bigger and smarter all the time, told us at supper last night that space makes you fly - outer space that is. What a joy it is to watch him grow up and what a wonder to think what is to come.

Collin and I are a bit under the weather. Just as Duncan was finishing his antibiotics, we had to take Collin in for an ear infection as well. I have been coughing and nearly lost my voice, but it doesn't feel like whooping cough again, thank goodness.

We have a couple of support listmates in need of prayers at this time. Visit them at: http://www.caringbridge.org/mo/chloeallemang/
and http://www.caringbridge.org/ia/danisdiary/

Friday, February 28, 2003 9:37 PM CST

Duncan woke up several times in the night crying that his ear hurt. First he wanted a band-aid, so I humored him, but not surprisingly it didn't get better. I couldn't decide whether to wait it out or take him to the ER right then. I knew it had to be bad for him to wake up crying several times. But since I had no sleep, I pushed the Tylenol and we made it until morning. I won't go to our local ER if we don't have to. As awkward as the Children's ER is at accessing his port, I'm not going to take a chance at a hospital without a cancer clinic.

So we made it to clinic today, it actually wasn't faster to go to the pediatrician, they had a pretty full schedule. We saw our first contact there, Dr. Huh (I was beginning to think he had finished his fellowship and moved on), and now have antibiotic and analgesic for the ear infection.

Duncan still has happy marrow, ANC of 3650 today - the goal is 1000-1500. So his chemo will be increased, we are just waiting for his oncologist to pass the word on Monday which one will be increased first. Duncan's marrow seemed to be in a recovery period before we started this phase of treatment and the new lower dose of chemo isn't doing much to keep it down. (Since the good cells are killed along with the bad, they measure the number of good cells to determine the efficiency of his chemo.) Now they will experiment with dosages to get just the right chemo cocktail.

The boys didn't mind our recent ice days and we even went out to slide around a bit. I got out some boxes to "sled" down the driveway, but on the first pass Duncan turned around and slid into the cactus off one side of the drive. He had several layers on, so the prickles were stuck in his clothes rather than his arm, but we confined ourselves to walking after that.

Tueday, February 4, 2003 3:50 PM CST

Duncan had a speech evaluation at Children's today. He does have a mild lisp, which the therapist seemed to think was borderline on whether he would grow out of it or actually need therapy. I decided to go ahead with a month to six weeks if approved by insurance, it can't hurt. Most of his mistakes in pronunciation were normal for his age however, things that he should grow out of in the next few years. She agrees that he is understandable. So yay for that!

We have been having signs of spring already, I'm looking at a robin on the neighbor's fence as I type this and I've seen a road runner in the area quite a bit lately. Saturday was a beautiful day here in spite of the tragedy coming to ground just a few hundred miles from us. Selfishly I hope it was far enough from us as we were getting warnings all weekend to not touch any space shuttle debris, but I also wonder what long-term effects will be for those in east Texas and western Louisiana who were under the cloud. I haven't heard any explanation other than "don't touch it, it could be toxic." Toxic how?!

On a happier note, Duncan started the last part of his treatment today! Not too much has changed, except I don't have to stick pills in his mouth in the middle of the night and hopefully he will get to go for blood counts monthly soon instead of every two weeks. We had a good time on Saturday at the Make-a-Wish art party, Duncan drew lots of pictures and Collin even painted. Hopefully they can use some of them. ;o)

Tuesday, January 28, 2003 at 03:39 PM (CST)

We had another exciting spinal tap appointment today. Duncan threw up in the car and was pale and clammy by the time we got to clinic. I knew it was probably low blood sugar and asked for our NP and they took Duncan back right away to start an IV. He slept through most of the monitoring and was wide awake in time for his chemo, just when they need to knock him out again.

Still, it went well, a little smoother than usual actually since he was hooked up to all of the monitors while he was lethargic and didn't protest the tap at all. They cut some of his sedative dose since he had problems last time and he had been "floppy" when we got there, but it went really fast and the fluid looked clear, always a good sign.

We are going to try to find out what Duncan's "Wish" would be again soon. I'm not sure he understands, we may just end up at Disney, but on the other hand he sure likes the Wiggles now.

Saturday, January 04, 2003 at 01:34 PM (CST)

It's been more no news is good news as far as Duncan is concerned. We had a good Christmas, with my mom and dad coming over for Christmas Day. Duncan's favorite gift was the Rescue Hero Hal E. Copter who has a special backpack helicopter thingy. Collin was happy to get a tool box of his own instead of fighting Duncan for one. The rest of us were just happy to be together.

We've had more bad news, Duncan's remaining great-grandmother passed away a few days after Christmas. Hopefully he will have some memories of the two of them, and we have some photos of all the generations together.

Collin's birthday is a mere week away, having them three and a half weeks apart around Christmas and New Year's is too much at once, but we'll have a small gathering at home. I'm still threatening to have "half-birthday" parties instead.

Duncan's next spinal tap should be the 28th, plus any weeks for low counts, so I probably won't update until after then.

Monday, December 16, 2002 at 12:45 AM (CST)

Duncan's 4th birthday party was held today. A roaring success, and every birthday is a success, isn't it. You can see a slide show here if you have Power Point, I think:
http://home.earthlink.net/~neus940/4th%20bday.pps

Duncan got a Leap Pad with extra books, a Billy Blazes Rescue Hero and the Rescue Jet, a Bob the Builder Memory game and glass with straw, a Learn to Hit Baseball, and a Blue's Clues sweatsuit outfit. I think he's played with everything already! Hopefully this will keep him from wanting to open Christmas presents for a little bit longer.

And the best present, which he's not even aware of, is being almost to the last phase of treatment.

Saturday, December 07, 2002 at 04:46 PM (CST)

I forgot to brag on our Light the Night results - Our team raised the most money and Duncan was the top fundraiser for Denton! Hooray! I put all of our money in Duncan's name so he could go up and receive a certificate with his name on it at the awards this year, but we got our plaques in the mail. They are engraved wood, very nice, but no names. And I guess no ceremony. Oh well, we're doing it for a cure, not for prestige, maybe I'll tack on a presentation to his birthday party. I just want Duncan to be proud and see how many people care about him.

Our team brought in $4,851.00, behind three other friends and family teams and only five corporate teams in North Texas. Hooray for all of you who supported us again this year. Thank you very much!

Friday, December 06, 2002 at 06:03 PM (CST)

Duncan and Mike are visiting Papa Neus tonight leaving Collin and I here to tear up the Christmas tree. JK, Collin has pulled another ornament off the bottom, but it's plastic of course. Duncan spent all his hospital stays with daddy there at night, so I'm sure this will be no big deal. He told me bye and said let's go, so much for mushy farewells.

He is doing great, nothing new to report really. He is starting the last week of the first half of treatment, but there's really no milestone to it other than being week 65 of 130 (no big procedures, no change in treatment, etc.). Still, I'm happy he's halfway through!

Monday, November 25, 2002 at 04:41 PM (CST)

*** I don't know what happened to the first part of this, I am editing on December 6 and funny things are happening (our counter also got wiped out). ***

r, we are probably having Thanksgiving in a box or going out, and get out Christmas decorations (Duncan is excited about that!) and I have to plan Duncan's Bob the Builder birthday party soon. Can we do it? I don't know, maybe. ;o)

Friday, November 08, 2002 at 01:40 AM (CST)

Duncan is in week 60 of his 130 weeks of treatment - almost halfway done! Tuesday was a long day with a spinal in the morning - well, afternoon by the time he actually had the procedure. His oxygen saturation immediately dropped when the sedative was administered, not the first time this has happened, but I don't think it was as severe before. I was very glad his oncologist was in the room although the nurse and respiratory therapist were very competent. By the time he recovered from that, which was only a couple of minutes, he began to stir a bit, he has a really small window of sedation on this drug. I suppose next time we will discuss an alternative, I don't know what will happen. I know at other places kids are taken to the OR and completely put under for spinals, but that would probably mean a whole day at the hospital, plus the trauma of going in to the OR.

I think Duncan is starting to add all this stuff up in his head, he was very resistant to any of the monitors being put on him. He fights the sedatives too, but we have five more times to do this, we have to come up with a solution.

Tuesday night he and I went back to the hospital to the ER because he got up from his nap with a fever. There's something about getting in the car to go to the ER, he immediately starts getting better. He told me he felt better on the way there, but I kept going because he didn't make up the fever, and I was concerned about the needle sticks he had earlier in the day, in addition to just being at the hospital earlier. He must have held a bagel for two hours, then started eating it when the doctor came in the room. They kept telling me his temperature was around 99 (converted from Metric), but I knew he was warmer than that and checked it myself when we got home - not in the ear as they do, but under the arm - and it was a bit over 100. But it was gone in the morning, so either it was a short-lived virus or the antibiotics they gave him really worked.

Now it's steroid week, so send some happy vibes our way over this weekend and help us to be patient!

I made a photo collage I will upload soon, check out our homemade bird costume in the lower right corner.

Monday, October 21, 2002 at 10:40 PM (CDT)

e would wear it, but he likes the hat I made and asked to wear it.

Duncan has a spinal coming up in two weeks. Have I mentioned before I hate doing these? But they're counting down, after this one only five to go, God willing.

Friday, October 04, 2002 at 03:45 PM (CDT)

Our local Light the Night walk was last Thursday night and Duncan's Dashers was quite a success in spite of a smaller team. With more checks trickling in, our total will top $5,000! I need to confirm, but I was told we were the top team at our location, the winners of a catered meal.

I came home and collapsed after the walk, ran a fever the next day and finally went to the doctor on Monday after coughing on and off for three weeks. Still don't have a good answer other than allergies, and have a sackful of drugs to take, but it is getting better now.

Duncan is doing very well lately, and even the 3 y.o. discipline struggles seem to have eased. He's enjoying mother's day out and had fun at "Parent's Survival Night" last weekend. There is a pumpkin patch not far away with a train to ride, so we have lots to do right now.

Wednesday, September 18, 2002 at 04:33 PM (CDT)

I've been a bit busy trying to gear up for Light the Night. The fundraiser in April gave us quite a bit toward last year's total so I've not been too aggressive, and it seems like charity and spending in general is down all over. We do have another fundraiser coming up this Saturday, a local car care shop is going to give us a portion of every oil change they do that day and we are going to wash cars for a few hours in their parking lot.

The walk is next Thursday evening. I am hoping to have most of the money collection all organized before we get there so I can enjoy the whole evening. It is a beautiful sight, all of the balloons blinking on and off and bobbing along a path. Hopefully we can collect some more funds in this last week and the fundraiser will be a big hit too. I'm not competing for prizes, but would like Duncan to get a certificate with his name on it this year.

Duncan continues to do very well with treatment, really no news to report. He did have a cough for a few weeks, but it has been decided that allergies are contributing to it. We all went to see Blue's Clues Saturday and the boys eyes' were glued to the stage the whole time. There have been more layoffs in Mike's office and they are getting closer to home, so we are preparing ourselves for whatever may come next. We'll check in again after Light the Night.

Thursday, August 29, 2002 at 02:25 PM (CDT)

We got back Monday from our 12-day road trip to see the family. Mike's brother Jason got married to Shelli in Iowa and Duncan was the ringbearer. We had our doubts, but he did a great job, walking very solemnly down the aisle. From there Mike's mom and grandma joined us for a few days on the North Shore of Lake Superior (Minnesota). What a nice change of weather with cold and fog for a couple of days. Then back down into southern Minnesota to visit with Mike's dad before we drove back again.

I got to meet one of my "listmates" for ALL-Kids, that was a nice treat. We've never made more than one friend in clinic as we have either been too busy keeping the boys occupied or have just been in and out for counts a lot the last few months.

Treatment continues to go well. We tried to go for a dental cleaning yesterday, but no one had told the dentist about Duncan's ALL although I was sure I had written it down somewhere on the forms I had filled out in July. The dentist wants to talk to the oncologist before doing anything more invasive than brushing, so I spent $15 on Amoxicillin for no reason.

Mother's Day Out starts next week so I will have about 4 hours a week all to myself, gee that sounds pathetic!

Tuesday, August 06, 2002 at 09:59 PM (CDT)

The spinal tap went well today. I don't know how long it takes to get results, usually just a no news is good news kind of thing, but it looked clear. Six more to go...

Tuesday, August 06, 2002 at 09:59 PM (CDT)

The spinal tap went well today. I don't know how long it takes to get results, usually just a no news is good news kind of thing, but it looked clear. Six more to go...

Saturday, August 03, 2002 at 11:26 PM (CDT)

Just a quick note to ask for your prayers as Duncan has a spinal tap on Tuesday morning. And to warn you that he will be on steroids after that! The dexamethaZone, as we call it, has not been nearly as bad as the first month on steroids non-stop. The highlights of our last trip to the Zone were Duncan wanting to wear his Blue's Clues Steve shirt and insisting he was Steve! not Duncan, in a loud voice, and some tearful schizophrenia over food one day. The Steve shirt has gone missing for the time being - no, really, I don't know where it is - and I will just give in to his food cravings for the week as much as reasonably possible.

Wednesday, July 17, 2002 at 08:46 AM (CDT)

I don't have any news other than I realized Duncan is 1/3 of the way through treatment. It has gone fairly quickly and all those days in the hospital for consolidation and the month of dealing with steroids is becoming more of a distant memory. I can really look forward now, treatment is so routine most of the time. I don't know if we'll have an off-treatment party, maybe a small one, but I plan on throwing the biggest bash I can afford when he is five years off treatment and we can consider him to be cancer free.

Please remember in your prayers two of the teens from the ALL-Kids list who both went through bone marrow transplants and are facing their second relapse. Matt is leaving us, and needs a swift peaceful journey. Kristin is gearing up to fight the beast again and needs support. See /mo/matthall and /fl/kristinhoffman to sign their guestbooks.

Saturday, July 13, 2002 at 02:13 PM (CDT)

Treatment continues as usual for Duncan. I'm the one who's totally off this week. Hadn't moved my palm pilot since vacation and missed the middle of the night dose of chemo. Oh well, at least he got it a few hours later.

I am happy he is staying on Bactrim for now. Although the alternative med would be administered only once a month, that's another one to two hours we would have to spend in clinic, keeping everyone entertained.

Duncan's oncologist agreed to combine his next spinal tap with the previous week's divided dose methotrexate, so that I will give him three doses instead of four, then the intrathecal dose will count as number four. Although I would very much like to put off the spinals as long as possible, if not altogether, I asked to move it up. Although we would probably be around for a day afterward to make sure there are no adverse effects, he also starts a week of steroids after each spinal. It's going to be interesting enough with Duncan as the ring bearer at his Uncle Jason's wedding without mood-altering drugs!

Monday, July 08, 2002 at 03:02 PM (CDT)

It's still been pretty quiet here as far as Duncan's treatment is concerned. Some friends asked us to share a beach house for a week so we spent the 4th on Galveston.

The house wasn't the only thing we shared though, we passed a bug around almost all of us. Collin and Duncan seem to be doing alright now, still drinking and eating and playing. Duncan will get checked out tomorrow along with a CBC and Collin will get checked out Wednesday for his 18-month well-check (which he's not quite well for).

Duncan has had his third delay in this portion of treatment due to low blood (neutrophil) counts though, so we have two things to discuss tomorrow. According to protocol, I believe, they should consider changing his antibiotic because Bactrim may lower counts. And this delay has pushed his next spinal tap to the week of his Uncle Jason's wedding. Not only do I not want to do that the same day we leave, NO ONE wants a ring bearer on steroids!

Wednesday, June 05, 2002 at 11:26 PM (CDT)

Duncan is still going along okay on treatment. We had a vacation to Ohio last week which we all enjoyed except for one night in the ER. Our first injury ER visit actually, but it was Collin! Turned over in a folding chair and bit the asphalt, quite literally. Looks like he'll be okay, if he can stop falling on his loose tooth.

Back to Duncan, he is doing well. Caught a bit of a cold in Cincinnati, but dodged the four-hour fever limit while we were there. He has had a fever since last night, but didn't spike high enough for an immediate visit, and he is doing well otherwise so the clinic told us to just watch him at home. However, I had to take Collin to the pediatrician this afternoon with a swollen eyelid, so I got Duncan's ears checked while we were there, and no big surprise, he does have an ear infection.

Now the boys have almost identical antibiotic prescriptions in the fridge and Collin has been to a doctor every day this week. That's about all our news, I need a vacation!

Thursday, April 25, 2002 at 12:45 PM (CDT)

Still no news is good news with us. Duncan has his next spinal in two weeks, which I am getting a little anxious about. Just because it's been long enough that it's not routine anymore and because of the scares and one relapse happening on the ALL-Kids list right now. Even some of the parents/grandparents are having to deal with their own cancer right now.

My dad is out of the hospital and into a rehab center for now. We are facing the possibility that it's time for a nursing facility. The colon blockage cleared up with no explanation other than probably adhesions around his surgery for colon cancer ten years ago.

We are making plans for some family vacations this summer. They are both weddings that are being stretched into big trips. I think most of our vacations the last three years have been planned around such affairs. It should be great fun though as Duncan will get to ride Thomas the Tank Engine and see Papa and Grandma and go exploring by the rivers.

Sunday, March 31, 2002 at 08:25 PM (CST)

It's been a "no news is good news" few weeks since my last entry. Of course I got the latest bug after everyone else had recovered and was quite miserable for a week. And the computer was down all week. Uncle Jason and his fiancee Shelli visited us the week after for spring break and we've just been getting back into the swing of things this week.

It's been enough of a break now that I can't imagine going in for heavy duty chemo again, but we still have a spinal, vincristine, and week of steroids every twelve weeks. I'll try not to think about it until the time comes, but that's the part I hate the worst.

Monday, March 11, 2002 at 11:09 AM (CST)

We're quickly adapting to the newest "norm" in our house. Maintenance is going well, clinic visits seem to be very far apart although it's only two weeks at the most. It looks like Duncan will get a finger stick to check counts one time, then a port access the next time since his port needs to be flushed with heparin once a month even when it's not being used for chemo.

It's been a hard winter for us with several bugs going through the family. The latest had Mike out of work for a week being dizzy and generally miserable, and the boys had a fever for a couple of days. Duncan's cough seems to be lingering a little and I am finally coming down with it as well. His counts were good last week, though, so we dodged another hospital stay in spite of a 102.2 fever.

One of the dads on the ALL-Kids List-serv that I am on wrote a post a while back about the things he didn't know before his daughter was diagnosed with leukemia. I've been making a mental list of the things I won't miss about our hospital stays. Number one has to be food service: not being able to order about a quarter of the menu because Duncan was given "toddler" status - we couldn't get a grilled chicken sandwich, but when we opted for a hot dog we were offered chili and cheese! I won't miss having a doctor paged to okay food I would give my one-year-old (Teddy Grahams!). I won't miss hours and hours of kid videos. I won't miss telling my son the playroom is locked on the weekends. I won't miss trying to keep Collin corralled in the room and happy. I won't miss changing a crumby and crayoned bedsheet daily. I won't miss trying to get vomited-on laundry into the one working washing machine in the hospital. I won't miss being grip - trying to keep up with Duncan while pushing an IV pole, hold up the extra tubing, and keep everything from getting tangled. I won't miss residents who don't seem to bother reading our chart before they come in. I won't miss trying to keep up with which nurse likes cotton balls or gauze. I won't miss pulled-out port tubing. I won't miss expensive cafeteria food. I won't miss sitting around all day with nothing to do but eat. I won't miss the rush to pack everything up when we are officially released. And mostly I won't miss those late night drives home which tend to get emotional listening to the wrong music and thinking about the angels I have come to know from the list-serv.

Thursday, February 28, 2002 at 09:46 AM (CST)

Not a lot to report right now. Duncan is neutropenic (low segment to his wbc count), so we are off chemo for a week. I suppose it could take a couple of months to get everything adjusted so he's tolerating it well. Back to clinic next week to check counts and see if we can get back on course. Meanwhile, he's being a normal three year-old and being really cool or sweet, then bugging the heck out of me... Funny how I can be nearly in tears at the Kindermusik class singing "May there always be Duncan," then ready to threaten his life myself a few minutes later. My life doesn't need to be any more interesting right now.

Wednesday February 20, 2002 8:40 PM CST

We are a week into the first half of maintenance now. Duncan has turned out to be a champion pill-taker, which is quite a relief - no crushing 7 pills into applesauce in the middle of the night. On the other hand, it's not been an entirely smooth transition. The nurse advised some of the kids have an adjustment period before the nausea abates. We are hoping that's all it is and we don't have to keep anti-nausea drugs on hand for the next two years. Other than that, he is doing great.

Wednesday February 6, 2002 10:19 PM CST

I took Duncan in to clinic yesterday with a fever still. This time the dr ordered chest x-rays and antibiotics (actually she sounded surprised they didn't give any in the ER). I was braced for the worst since I was there by myself with him and Collin, but Duncan was a trooper for x-rays, he's such an old pro at this hospital stuff.

The diagnosis from the oncologist we saw and our nurse was that "there's this funky cold going around," and that Duncan's fever was probably being caused by the ear infection he has. A dose of Rocephin and the fever hasn't come back. Gee, you think that maybe if they had given him antibiotics in the ER he wouldn't have had a fever for three more days?

Saturday February 2, 2002 11:11 PM CST

As we thought, we got out of the hospital yesterday morning, but just barely morning! Obviously they didn't need the bed because they took their time discharging Duncan even though he cleared his chemo right on time. We got to go to Sesame Street Live last night and had a great time.

But we were back in the ER tonight for fever, the second time in two weeks - always happens when the clinic is closed. They just think Duncan has a cold, although they took blood to do a culture since his port was accessed yesterday. His fever is coming down now after some meds at home and we are due back on Tuesday for counts. A week after that marks the end of consolidation - on to maintenance!

Wednesday January 30, 2002 9:51 PM CST

Well, they tried to fool us this time. We hadn't sat for more than two minutes before they called Duncan in for blood and height/weight. Highly unusual. But, then we sat in the waiting area over an hour before we even got an exam room. So, same old story. Three hours from our "appointment time" until the spinal tap was started. Since we were delayed last week and couldn't get the early slot, this put us at about 11 pm before the IV chemo was started.

Sometime Friday we'll be sprung...

Tuesday January 22, 2002 11:00 PM CST

We have had an interesting few weeks. After leaving the hospital from the last chemo session, Duncan threw up on and off for about a week, probably just a stomach virus they say. Then yesterday afternoon he had a fever. Not high, just high enough to monitor for a leukemia patient. But after he took a nap on the couch I checked it again at it was 101.6 so I called in. Not really expecting anything since we were due in for chemo at 9:30 this morning, but they had us go to the ER to get blood counts and some antibiotics. I must say the ER lived up to my expectations - it was crowded, everyone seemed to be coughing - a veritable sea of germs!

We did get preferred treatment though, were seen by a triage nurse within a few minutes and taken to an isolated "subwaiting" area. However, we waited there quite a while and during that time, Collin took a tumble and busted his lip on the floor. His first very bloody, fat lip. Well, what do we do now, we thought, go out and sign him in? But a bit of gauze and ice and lots of holding and we all recovered.

Duncan turned out to have an ear infection and received a dose of Rocephin. His counts were good enough last night that he didn't have fever AND neutropenia, so they wouldn't admit us even though we were due to be admitted today. They insisted on deaccessing his port too, after they had accessed it to draw blood and administer the antibiotic. So this morning we went in for a finger stick and another port access when they found out that today he is neutropenic, but has no fever, so we're still not admitted for fever or for our scheduled chemo.

So, hopefully next week will now be our last *scheduled* hospital stay and Duncan will move on to the maintenance phase of treatment in a few weeks.

Monday, January 07, 2002 at 01:06 PM (CST)

Hospital stay number 5 is behind us, but not forgotten. Due to the holidays we were scheduled on Friday rather than Tuesday, which is good because Mike could stay with us the whole time, but bad because we were there over the weekend with weekend staff and playroom hours. This was the first time Duncan really got sick from the chemo, and we are waiting to see if it has passed yet. He is in good spirits, although refuses any offer of food.

Back again on the 22nd for the last scheduled stay! Until the port is removed I think, sometime in 2004?

Tuesday, January 01, 2002 at 11:23 AM (CST)

New Year's was celebrated at Eastern time last night as we had some friends over and two 3-year-olds together well past bedtimes starts to get dicey. Duncan continues to do well, his hair is still growing back from induction and it looks like it is here to stay. We go into hospital on Friday for #5 (out of 6) intravenous chemotherapy. I am looking ahead to the next phase of treatment, which is generally referred to as maintenance, but our official "roadmap" calls intensive continuation. For us, I think it means oral meds at home, a dose every 6 hours for 24 hours, then blood levels checked in clinic, every other week. This goes on for basically a year. And we can't forget the lovely spinal taps with chemo that continue every 12 weeks until the end of treatment.

P.S. Someone told/wrote me recently to email pictures, but I've already forgotten who it was - sorry! Cancer mommy brain... I am putting new pictures on picture trail under texneus.

Wednesday, December 19, 2001 at 05:06 PM (CST)

Duncan's 3rd birthday party was Saturday and it was a roaring success! All the 3 year olds loved bowling, and Duncan got lots of presents.

As far as treatment goes, it continues to go well. The last hospital stay was busy with Christmas activities, the Texas Rangers came by, the Coca-Cola bear came by, the kids got to go shopping for family members one day. We were supposed to see the Olympic torch, but it was running behind so they didn't bring it!

We are excited about Christmas for the boys of course, but it's just not the same this year. I keep wishing for a change of scenery, thinking that would make it better.

Happy Holidays!

Sunday, December 09, 2001 at 03:41 PM (CST)

As for everyone it seems, December is a busy month in our household. Unfortunately it seems half of that busy-ness is medical stuff. Duncan goes to the cardiologist for hopefully his final follow-up tomorrow (this is from non-closure at birth and we would have done this w/o the ALL), then to clinic on Tuesday for spinal tap with chemo and hospital admission for IV methotrexate, and next Monday is his 3-year checkup at the pediatrician's office. Hopefully he won't freak out like he did at Collin's 9-month checkup. Then after that vincristine is due on the 18th and 25th, but I am not subjecting him to anything on his birthday, so we'll put those off a day. And of course a week of steroids inbetween.

Yes, my 3 year-old will be in the full throes of a steroid pulse for Christmas. Can you tell how thrilled we are?

Monday, November 19, 2001 at 09:46 PM (CST)

It's been a long day. Our nurse called last week to see if we'd want to move our LP up a day so we could probably get out of hospital for Thanksgiving. She told me we could keep our same appointment time, but while Duncan was having his blood drawn after we showed up at 9:30, I was paged and informed we would have to wait since our appointment wasn't until 1:00. Oh, I was furious! The nurse told us to stick around, which we did, but it was still 1:00 before they got to us. On the other hand, if we'd had a 1:00 appointment it would have been 2:30 anyway, so I should think of it as being only two hours delay, right?

Anyway, a very late start with the LP, so a late start with chemo, so I'm sure we'll be in until Thanksgiving day now. We had a chance to back out and go home since his ANC was below threshold, but since he's not on study and platelets and monocytes were high we were allowed to continue without further delay in treatment.

Saturday, November 10, 2001 at 01:00 AM (CST)

I thought we'd have to make a trip to the ER last night, but it had nothing to do with cancer! We've finally come to that age, I know that a lot of kids do this, but still I'm a little embarassed... Duncan shoved a raisin in his nose! Mike just asked for tweezers and calmly pulled it out, I don't think I would have attempted it myself, but I'm so glad he did. Then we tried not to laugh too hard afterward.

I had to think about what week this is for a moment. We are on a short break from clinic and hospital right now, but will be back on the 20th. I'm trying to decide whether to start making pieces of Thanksgiving dinner to keep in the freezer until then since we definitely won't be making it that day.

Sunday, November 04, 2001 at 12:06 AM (CST)

We had to stay a third night because Duncan hadn't cleared enough of the chemo from his body, but were released first thing Friday. Duncan was started on one antibiotic in the hospital, then given another before we left which was supposed to take care of the ear infections, now we have to give him his usual antibiotic at home, but he's fighting it, gagging himself. The pharmacy has switched brands of generic twice now, am I going to have to find out what brands different pharmacies are currently carrying before I have his prescription refilled then have it transferred to the appropriate store? He only has three oral meds right now, and he only takes one willingly. What are we going to do when there's more?

Thursday, November 01, 2001 at 08:39 AM (CST)

Duncan should be finishing his second in-hospital round of chemo today. He is tolerating everything very well, but did get sick once yesterday. Of course it was half an hour before trick-or-treating was to start and he was more upset that I was yanking his clothes off of him to try to get them washed and dry in time. On Friday I brought out the green-striped "Steve" shirt (Blue's Clues) that had been hiding in the closet until Halloween, and he fell in love. Has a hard time parting with it for the laundry. Otherwise he has tons of energy and mischief in him. We all had a touch of the crud when we checked in, Duncan's had led to ear infections, so he's getting a different antibiotic this week.

Saturday, October 27, 2001 at 11:15 PM (CDT)

I was just bragging on how well treatment was going and hoping I wasn't just living in a state of denial about having no problems when we got a reality check today. We all went to Little Gym this morning since they were going to wear their Halloween costumes and Collin is Blue to Duncan's Steve. Mike pointed out that Duncan's lips looked pale - our first flag that something was wrong back in July. I told him (and myself) that he was hot running around in long sleeves and pants and we should just check him after class was over, but still I just wanted to sit down and cry right there. We got into the van and were going home when Duncan started coughing and getting upset, but his lips had their color back after he cooled off. The day went okay, but after being asleep a little while tonight he woke up coughing and crying. I think it sounds croupy, although we haven't had that in our house yet. It feels like all the rules have gone out the window now and we're not sure what to do anymore, so we called the oncologist on call at the hospital to see what we could do for Duncan. He is resting now, we gave him some Dimetapp, and hopefully will be better in the morning. Now I am at the stage where I don't want them putting more chemicals in his body, but on the other hand, I don't want there to be a delay in his chemo if he really needs it.

Wednesday, October 24, 2001 at 09:46 AM (CDT)

Went for a brief treatment yesterday and found out that hospital policy has changed regarding scheduling spinal taps and hospital stays on days other than regular clinic days. Which means we now have to be admitted for IV chemo on Tuesdays. Which means we're spending Halloween and Thanksgiving in the hospital. Big sigh. Well, we spent Christmas in NICU when he was born, what's Thanksgiving too? We have good friends who won't let us eat cafeteria food. I'm the most bummed about Halloween I think because he'd do really well this year and I had coordinated costume ideas for him and Collin. Oh well, I guess they'll do something in the hospital. Following some of the other ALL kids I've heard about, I am really grateful that Duncan is doing so well and this is "just" a scheduled stay.

Wednesday, October 17, 2001 at 01:27 AM (CDT)

We had our shortest visit at the clinic yet today, but then again, we didn't see a doctor or wait for blood counts before treatment. Duncan started steroids again tonight, and promptly had a tantrum, but we are assuming that this is a tired going on three years old tantrum. Everything is going well, which makes me worry - mothers! Back in a week for the same treatment, then a spinal and hospital stay next Friday.

Friday, October 05, 2001 at 08:34 PM (CDT)

Since we received the news of remission and Duncan came off of the steroids, life has indeed become more "normal," to an extent. On the one hand I want to move forward with treatment in order to get him cancer-free and get on with the rest of our lives, but on the other hand I worry that the drugs that are saving his life will damage his body. The professionals keep telling us that this is unlikely, but the nurse practitioner we spoke to today recommended we take advantage of the Early Childhood Intervention program offered by the state.

At this hour we are in the hospital, still waiting to begin the first of six intravenous methotrexate treatments. The good news is that Duncan is in an amazingly good humor after recovering from the spinal tap earlier today. Every previous hospital stay he has just moped in bed watching tv, but today he is coloring, playing with cars, and walked to the playroom for a short while. I am so thrilled! At this point we are waiting for his body to be ready for the chemo, I can't blame it all on the hospital/clinic this time.

Tuesday, September 25, 2001 at 12:13 PM (CDT)

We're getting our Duncan back! It's so wonderful to hear him laugh and see him play after being so down for so long. The new medicine is chewable and tasty I guess and the antibiotic is going down smoothly now. He even willingly got in the tub last night! We're not completely tantrum free, but we're going to have to blame that on being two going on three now. ;o) Now hopefully some of the 9+ pounds he put on will come back off so he can run! I am so excited to see him act like himself again!

Friday, September 21, 2001 at 09:14 PM (CDT)

Day 28 - We had our "Day 29" bone marrow aspirate today and Duncan's leukemia is in remission! I am happy, but it seems rather anticlimactic since there is still so much to go. Everyone made a big deal about having a two week break and being able to have something of a "normal life" for a while, but there's still medication at home everyday. We will give Duncan his last dose of steroids tonight, then wait for them to start wearing off soon. I'm afraid we will spend all of this break getting Duncan back to "normal" then start in on heavy-duty treatment again.

Still, it is wonderful news and means we can move forward with treatment and maybe plan a few things around the consolidation schedule.

Another bit of good news - we participated in the Light the Night Walk here last night and our team - Duncan's Dashers - raised $5,000.00 to benefit the Leukemia and Lymphoma Society in their search for cures!

Tuesday, September 18, 2001 at 10:52 AM (CDT)

Today is normally a clinic day, but we have no more chemo this week! Induction has been awful, I think more because of the steroids than anything. Duncan has the appetite of a horse, and until recently would just lay around all day. He has put on over 5 pounds I think. Every symptom I mention to the doctors they just attribute to the steroids and tell me it will get better after he is off of them. 3 1/2 days to go! Assuming he is in remission, and his rising blood counts and greatly improved behavior the last few days would seem to indicate he is. I am starting to hear my little boy in there again. Take the normal toddler moodiness and multiply it by 10 and that's what we have lived with for a while. I have heard this first month on steroids described as PMS or as the ninth month of pregnancy, and those are pretty close.

His hair is starting to come out now. I'm glad he seems to be too young to care about the changes in his body appearance, because it is hard enough on me.

We are thrilled with the donations we have collected for the Light the Night Walk. I just hope we get our banner done in time.

Friday is our day 28 bone marrow aspirate, so we will have more news then.

Monday, September 17, 2001 at 01:11 AM (CDT)

Duncan was born December 18, 1998 after I was (in my opinion prematurely) diagnosed with preeclampsia. His lungs weren't quite ready and he spent 15 days in NICU, but once we brought him home he was the picture of health.

When Duncan was eight months old, a teenager pulled out in front of me on a road with a 60 mph speed limit, but he and I walked away without a scratch.

In February of 2001, Duncan contracted rotavirus and had to be hospitalized to avoid dehydration, but bounced back quickly.

I tell you all this just to say that he is a fighter, and that we believe he will overcome this next great challenge.

In July we noticed that Duncan was pale and occassionally tired - the boy that hated to go to sleep was taking naps! At baby brother Collin's 6 month well-check, I was going to mention this, but before I said anything about it our pediatrician said to me that Duncan looked too pale.

Dr. Dhoot had blood drawn to check for anemia and when he got the results sent us immediately to the Hematology/Oncology Clinic at Children's Hospital in Dallas. Duncan's blood count at that time only showed very low hemoglobin/red blood cells and no reticulocytes (precursors to red blood cells) so he was diagnosed with TEC.

He had a transfusion and we went home and explained to everyone about transient erythroblastopenia of childhood and waited for his bone marrow to start making red blood cells again so this could become a distant memory.

The doctor continued to monitor his blood counts, but after 4 weeks I knew he wasn't getting better. The next blood test confirmed it and we were at the hospital once again getting a transfusion and a bone marrow biopsy "just to make sure."

So now you know here we are battling acute lymphoblastic leukemia. It is a long road ahead of us, we are just praying it will be a smooth one. The doctors give us a good prognosis, although we do not know what risk category we fall into.

Duncan is nearing the end of the first and shortest portion of his treatment called induction. He has tolerated it pretty well, with more of the side effects being steroid-related than chemo-related it seems in our nonprofessional opinions.

We are busy keeping his food cravings satisfied and going to clinic about twice a week right now. We expect to find out that he is in remission on Friday, then it's on to the next phase - consolidation.

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