Journal History

Click here to go back to the main page.

Tuesday, June 15, 2004 3:54 PM MDT

Day 678

Well, it’s been a year without an update. I confess to a certain superstition that says that as soon as you mention that “things” are going well, they begin to go poorly. I’ve had many requests for an update, but what finally prompted me to write one was a particular conversation. Someone said that it is helpful and hopeful for other families on this journey to read about kids whose disease and recovery has taken a different path, particularly stories of kids who’ve had some success with their treatments. So I’m sitting here after photopheresis and during IVIG, writing.

Here’s the year in a nutshell, although it’s a pretty big nut. It may sound a bit like those printed Christmas letters that people send. Oh well, once you start telling stories it’s hard to stop.

Make-A-Wish

In August of last year, at about one year post-BMT, Galen got to go on a Make-A-Wish trip to New England to visit family and the beach. His wish was to take this trip in a motor home stocked with food from his favorite food market. Judie Jamros at Make-A-Wish of Colorado arranged the trip, Nolan’s RV supplied us with a motor home, and Pete Marcyzk, Barbara Macfarlane and the staff at Marcyzk Fine Foods in Denver graciously filled our fridge and cupboards with Galen’s favorite foods, and they even loaned us a grill to cook out on! We dashed to New England where the kids (Batson Trio) played in a family wedding. They got to visit with their many cousins, aunts and uncles and Grandma on the Cape for a week. Then we dashed back to Colorado. It was a fun but quick trip.

Broviac Removal / New Line Installation

Galen’s broviac was removed in September, and of course as soon as that happened he had a serious flare-up of the ever-present Graft vs. Host Disease. The BMT folks decided that he should try a process called “photopheresis” to combat the GVHD, and they installed a new central line in October. It’s a line that’s larger and stiffer than the comfy broviac he was used to. Galen tells people that it’s as big as a garden hose, which is only a slight exaggeration.

Current Treatments

For two days every two weeks, we travel to Children’s (Denver) where he gets hooked up to a photopheresis machine. During photopheresis, his blood is cycled through the machine and white cells are drawn off. His red cells and plasma are returned to him after each collection cycle, and at the end of a few hours, the collected white cells are treated with a drug to increase their susceptibility to UV light. Then they are exposed to UV light for around 30 minutes and returned to him. Somehow the UV light reduces the effect of the white cells responsible for causing Graft vs Host Disease. If it seems like a murky bit of science, it is.

After several months of this, we started to see improvement in the GVHD. The goal is to use photopheresis to cover the GVHD while the BMT folks try to wean Galen from the steroids (oral meds AND swish AND ointment) and cyclosporine that he’s still taking almost two years post-transplant. We’re far from through, it seems. In addition to (and because of) the steroids and cyclosporine, Galen still takes a fistful of supportive meds.

In addition to photopheresis, Galen gets a monthly infusion of IVIG and a checkup every two weeks at Children’s in Denver.

School

Galen’s completed another home school year and will be entering 7th grade in the fall. This was G’s fourth year of home schooling, and next year we’re trying something different. He’s been accepted into a program that offers coursework on-line, which will give him access to kids his age who are studying at the same level that he is. He’s looking forward to it, and has selected three courses to begin with.

Music

Galen still studies cello. In a local concerto competition, he won an opportunity to perform a movement of a Golterman concerto with our adult orchestra. He still plays in the family trio with his sister and brother. This summer he is attending the Rocky Mountain Summer Conservatory, where he will get to play with other kids his age.

Sports

He trained with the Winter Sports Club in their biathlon program, which is a combination of cross-country skiing and marksmanship. Next year he hopes to join the telemark club too.

This spring Galen joined a recreational soccer team for the season. He looks forward to every practice and every game, and is able to participate fully, finally.

Camp Wapiyapi

He has just completed “the best week of the year” at Camp Wapiyapi in Estes Park. Kelsey attended this year, too, as a Junior Companion. They came home last week exhausted and sick with colds, but really happy with the week. In the middle of camp, Sean and I bailed them out overnight for the trio to play at the Children’s Hospital Ceremonial Groundbreaking event. This was the huge kickoff to the campaign to raise something like $250 million to build and support the new Children’s Hospital. They enjoyed playing, and have been invited to play at two other events as a result of the Children’s gig!

Siblings

Kelsey is 16 and just finished her sophomore year of high school. She traveled to Mongolia with a group from school, staying in “the country” with the nomadic people and their horses. She got to spend a couple of days in Beijing at the end of the trip, seeing the Great Wall and Tieneman Square. Kelsey and her youth orchestra stand partner achieved 2nd place in a concerto competition in Denver during the winter with a double violin concerto. She’s getting ready for Conservatory (she’ll attend as a violist this year), and a trip to Europe and Mexico City with a friend’s family. They get to return from Europe on the new Queen Mary II! The biggest challenge of her travel is finding enough nice clothes among her rag collection!

Sean, 14, has finished his freshman year, and he got to travel to Peru. It was a formative experience in many ways. The group hiked from Cusco to Macchu Picchu, and helped plant the gardens for a children’s home in Puno. They visited Lake Titicaca, and an island made entirely of reeds on the lake. He lives for soccer, and gets to play on a U15 team this spring and summer, in addition to serving as a referee for our local recreational youth soccer league. Sean and his youth orchestra stand partner won honorable mention at the same winter competition as Kelsey with a double flute concerto. He’s playing flute (or piccolo) in the Emerald City Opera Company’s production of La Boheme in August. And, he’s looking for a job to fill in his spare time.

Enough Already

Those are the big things. Galen will be 12 in July. When he was diagnosed at age 9, it was hard to look forward to 10, much less 12. We still measure life one day at a time, and if we learn nothing else from this process, that’s plenty.

Sorry about not updating for so long. I’ll try to do better this year!

Actually, several folks have asked for details about Galen’s photopheresis treatments, so I’ll be updating those here.

Thanks for your continued thoughts and prayers,

Love,
Deb

Thursday, June 5, 2003 1:12 PM MDT Steamboat Springs, CO

Day 302

All is well in Steamboat Springs. Kelsey's finished with the 9th grade, Galen has finished his homeschool year and Sean has elected to finish his math curriculum and grammar course before beginning high school in the fall. So Kelsey and Sean will be in school, but Galen wants to continue homeschooling. It'll be his fourth year at home. We're considering building an instrument instead of doing formal schooling because Galen's so far ahead, but we can't decide between a bass and a harpsichord. Galen informed Sean that he wants to graduate from high school in 2007 when Sean graduates! When Sean asked him where he wants to go to college, Galen smiled at him and said, sugar sweet, "Where ever you do, Big Brother!!"

It's quiet here - Sean is doing math, Kelsey's reading, and Galen is AWAY AT CAMP!! He's at Camp Wapiyapi in Estes Park with about 70 other kids who've been tapped on the shoulder by cancer. (Hey you - turn around - I'm here to make your life extraordinary....)

I am going to Estes tomorrow to collect Galen, then on to Denver to collect Grandma Edythe at the airport. Then we dash to Steamboat, pack, and Galen, Grandma and I are off to Snowmass for Suzuki Institute for our 7th or 8th year in attendance. Galen will be a cello student the first week, and a bass student the second week and Sean will join us for the second week as a flute student. Kelsey has chosen to apply to the Rocky Mountain Summer Conservatory instead of Suzuki Institute, and she's been accepted. RMSC is a three-week residence program for serious youth strings players that begins when Suzuki Institute ends.

Sean and Kelsey are playing soccer this summer with most of the kids from their high school teams. Lots of practices, a few tournaments.

We're headed back to New England in August, all other things being stable, for Dani and Peter's wedding. We haven't been back for nearly two years, and are really looking forward to it.

We're more or less in a holding pattern with Galen's health care. Galen will begin his one-year post BMT testing in the next month or so. His GVH meds are slowly being tapered, so far with no ill effect. The testing and taper are wait-and-see events, and I've learned to Anticipate No Bridges, but to cross them when we get to them. It beats holding your breath all the time - not so dizzy.

So that's the news from here. Short update, I know.

Thanks for all of your continuing support, prayers, thoughts, energy. It all counts.

Love, Deb

Monday, April 28, 2003 8:15 AM MDT Steamboat Springs, CO

Day 264

I can't believe it's been two months since I've updated this site! It's been two months of what passes for normal in our household.

Medically, Galen is hanging in there. He's had a bit of a setback in the GVH department. About six weeks ago his regular every-two-week clinic visit was cancelled because the roads between Denver and Steamboat were closed for a major spring storm. So after a three week break, we returned to Denver one Wednesday to discover that Galen's platelets had dropped significantly. Dr Q scheduled a hurry-up bone marrow aspiration the next morning. He was of course looking for evidence of relapse, or some other cause for the plummeting platelets. The marrow looked good, and seemed to indicate that the platelets were being gobbled up once they hit Galen's peripheral blood. At the moment they have labeled this ITP, or Idiopathic Thrombocytopenia, which is another way of saying "we don't know why his platelets are disappearing, but we think it might have something to do with GVH." ITP happens to kids without leukemia and bone marrow transplants too, so there are some treatment options.

You'll recall that Galen has experienced GVH lately. GVH stands for "graft versus host" disease. This occurs when cells from the graft (donor cells) attack the host's (Galen's) organs. He's already shown probable skin, gut and liver involvement, all of which seem under control with steroids and cyclosporin. He suffered for weeks with severe mouth irritation until the cratering platelets were discovered. He had lost significant weight, and was quite uncomfortable.

ITP treatment involves steroids and a mega-dose of IVIG, and the IVIG was scheduled for the following Monday and Tuesday. Meanwhile the steroids were started and immediately helped Galen's mouth and appetite. The IVIG was administered over the two days. Each day was about a 7-hour infusion, with pre-meds to prevent any sort of reaction. You might remember that Galen was readmitted to BMT back in November after an IVIG infusion reaction in the form of high temperature. None of that happened this time, and the IVIG infusion was uneventful and successful. Galen's platelets came back up for a while, and although they had dropped to the low-normal range at his clinic visit last week, at least we know he's responsive to the steroid/IVIG treatment for now.

Eventually we learned that Galen's bone marrow results showed no evidence of relapse, 100% donor cells, and no Philadelphia chromosome. Poor G had a rough time waiting for that news. Although uncertainty is a fact of most lives, most of us don't get that. In Galen's case, and in the case of most of these kids living in remission from cancer, every setback is cause for alarm. They know exactly what to worry about.

Aside from "Springtime in the Rockies", with 65 degrees and sun one day and four feet of snow the next, life goes smoothly on.

Kelsey's in Costa Rica falling in love with a country and its people, and sharing her love of violin and music. Sean's playing soccer and flute and piccolo (thanks, Lia!), finishing up his 3rd homeschool year (8th grade), and trying to decide what to do about school for next year. Galen's tapering down from the current steroid therapy, finishing his homeschool year, and taking bass and cello lessons. He's looking forward to camp with Brent's Place, two weeks at Suzuki Institute, and summer mountain bike racing (if he has platelets.)

Life goes on. Don't blink or you'll miss it.

Deb

Wednesday, February 26, 2003 3:57 PM MST Steamboat Springs, CO

Day 203

The shortest month of the year has been a long one, and it's not even a leap year. We finished moving out of Brent's Place February 1st (thank you Cheri and Nancy - you guys are the best), and are installed full time in Steamboat. Galen and Sean have resumed a mostly normal homeschool schedule, and I am relearning how to enjoy the daily details of life in a busy household. In addition to the relentless snow, I am becoming reaquainted with the phones, the taxi-driving, the mail, the deck that needs shoveling, the taxi-driving, the well that's running dry, the kitchen drain that's clogged about 10 feet past the length of any available snake requiring an expensive plumber visit, and the endless taxi-driving.

Galen had a clinic visit on the 12th, during which he had a bone marrow aspiration to check his graft. Today we learned that his marrow is still 100% donor, and that there is no evidence of the Philadelphia chromosome. This is welcome news, and should tide us over in the "information to be nervous about category" until sometime before his next marrow! During the clinic visit on the 12th, Galen was also found to have some chronic GvHD which affects mainly his mouth. His tongue is frequently sore, and he cannot tolerate anything even vaguely spicy. For a boy who loves specialty gourmet foods and cooking, this has been a tough problem. (Help! Send recipes for bland but interesting food!) We return to clinic next Wednesday, weather and vehicles permitting.

So just as the roller coaster was flattening out a tiny bit, Valentine's Day happened. At Youth Orchestra rehearsal, we learned that Galen had been exposed to chicken pox earlier in the week. In the confusion of packing up after orchestra, contacting Children's for instructions, and coordinating with Yampa Valley Medical Center to administer the IG product that helps imunocompromised people fend off the virus responsible for chicken pox, Galen slipped on some ice and broke his left wrist. Thanks to Chris Porter and to Jean Fitzsimmons for their cool heads on that evening and the following day, and thanks to YVMC for working with us as carefully as they did.

Dr Bomberg checked G's xrays the following week, and gave him a splint to wear to protect the break. We put off cross-country skiing (physical therapy!) and cello (mental therapy!) for a couple of weeks, and just yesterday Galen was able to play through the Bach that he wants to perform at an audition on Saturday. He is one tough kid, this one.

The rest of the month has been less eventful. We've had a few household emergencies, but no health ones yet. Uncle Chris comes to visit tomorrow, just in time for the four new feet of powder that has fallen since Friday. (That's 4 feet for those of you in New Zealand. CB got a bit less, alas, but we got FOUR FEET!!)

Sean's had some fun ski races, and is looking forward to beginning soccer practice for spring season. He will attend state select soccer tryouts next month on fields as far away as Colorado Springs. Denver's field situation is dismal because of the drought. In Steamboat the soccer kids practice indoors if they play spring ball, because we don't have any open fields until April at the earliest, and usually May. Kelsey has started daily soccer practice and is preparing for her upcoming foreign trip with school. She has been to a coaching session for speed skating, and is hoping to continue that training as well. While resting his cello, Galen picked out several books of piano music right hand parts. Before breaking his wrist, he attended a workshop in Denver for cello. All of the kids are participating in Youth Orchestra, in addition to several other musical events. I'm trying to learn my part in the Brahms German Requiem for this year's choral society season, trying also to get regular exercise, and slowly trying to reconnect with friends as time permits.

It's an over-full life, and I'm grateful to sample a portion. It's nice to have a clear space in which to think, and dream, and guardedly plan for a future that includes the full lives of all of my kids. I don't take a bit of it for granted. Hug your kids, hug your partners, go ahead and hug the person in front of you at the Safeway if you get the urge.

I am still muddling through the best way to set up the Emergency Fund for families hit with medical emergency. If anyone has any expertise in this, let me know. I was thinking of calling it "Galen's Gift Emergency Fund", but Galen thinks that this connotes a fund to give gifts to him! Not that he is opposed to that, of course, but at any rate, if you have name suggestions, tell me.

Thanks, Lia, for the coffee-spitting emails.

Thanks to all y'all for your continued good wishes, prayers and support. Oak Street in Steamboat literally vibrates with the power of prayer and meditation on Sunday mornings. Amazing.

Love, Deb

There are new photos as of today!

Tuesday, January 14, 2003 at 10:54 AM (MST) Brent's Place, Denver

Day 160

What a difference a year makes. A year ago, we visited New England after Christmas. While there, Galen's activity level was lower than usual. He stayed home with Grandma instead of driving to Rhode Island for the day. He chose quiet activities in the midst of cousin chaos.

The drive home was a blur, but during the next few weeks he became listless and withdrew from normal household action. He fell asleep during his school lessons (he's homeschooled) and laid around on the couch a lot.

Visiting at Trousils, he was "flat", according to Cheri. A month of bloodletting, in the form of tests for mono and hepatitis, failed to cure him, and on March 22nd we were told to get to Children's Hospital. Do not pass go, do not collect... I canceled Sean's flute recital scheduled for that evening, and off we went. The rest is well documented.

Nearly a year later, Galen is sitting on the floor with a full head of curly hair and rosy cheeks. He's working on a math assignment, and planning to bake some chocolate goody later this afternoon from a cookbook he shopped for and bought over the weekend. Yesterday's clinic appointment went well, and we have a plan for the next few months, including returning to Steamboat to live.

We've learned a ton. We plan for survival, so we keep up with schoolwork and cello. And although we try to live in the now, and experience the joy available in each moment, we also remain vigilant, casting sidelong glances every now and then. The black hole of cancer will be always by our sides, neutral, neither pulling us in nor coming to get us. Just there.

As we make the transition from our dependence on Children's Hospital to life in the new normal, I want acknowledge all of your good thoughts, prayers and wishes that have made me laugh and cry through the year. I want to acknowledge Brent's Place, Linda and Donn Eley, Adele, Diana, Rebecca, Libby, and Allie, and all of the volunteers and friends of Brent's who have made us a home away from home. I want to acknowledge the friendships that we've made at Children's and the new friends that we have in Denver. Thank you all.

Because of the generosity of the Steamboat community, I have been able to concentrate on my small part of Galen's continued survival. I can't begin to express my gratitude in words, so I'd like to try with action. With what funds remain when we return to Steamboat next week, I plan to establish a new fund to help people make ends meet during the shocking first weeks of a diagnosis of critical illness, for families in Steamboat and on the Western Slope. Stay tuned here for news about the new fund, and if you have ideas or info that might help, please let me know.

See you in Steamboat!

Love,
Deb and Galen


PS - I added some new pictures from Christmas, and a link below to a Steamboat Pilot article.

Wednesday, December 25, 2002 at 08:18 AM (MST) Brent's Place, Denver

Merry Christmas!

All is well for the time being. I'll post pictures after Christmas Day.

Love and blessings,

Deb

Monday, December 02, 2002 at 07:02 PM (MST) Brent's Place, Denver

Happy Thanksgiving,

We enjoyed a smoked turkey and lots of fixings here at Brent's Place. Galen's appetite is substantial (thanks to steroids for the GvH) and I think he polished off most of the leftovers all by himself!

David, Kelsey and Sean arrived Wednesday evening, after stopping for dinner and a movie!! Sean came down with a nasty cold on Thursday, so he and David headed for the hills. We got to keep Kelsey through Sunday, though. Over the long weekend we visited with Cheri and Ed, Jay and Eric, Teresa and Natalie. Danielle came to visit on Saturday, then returned on Sunday to take Kelsey back to Steamboat. Thanks for taking time out of your own holidays, y'all!

The new activity around here is knitting. Roxanne and Jean both influenced Galen to try to knit in his down-time, and now Kelsey and I have tried it. Kelsey's making stockings and Galen's knitting a huge scarf. (Haven't convinced Sean yet, and don't really expect to.) I've been knitting at clinic visits so I can have something to do that can be constantly interrupted. With all the commotion, it's too frustrating to read a book over there. Knitting is something I can do that's rythmic and predictable, that I have TOTAL control over, and that can be done in the background so I can still think. So I've made a couple of things, but don't tell anyone. It wouldn't be good for my image...

Today Galen went to clinic(s) for follow-up cardiac and pulmonary function testing. He'll also have follow-up visits at the vision, dental and neuropsych clinics. The tests are performed pre- and post-BMT and compared to note any obvious damage to these systems. I don't know what the tests will show, but Galen seems to be fairly energetic. We walk everywhere - it's a wonderful treat to be able to do all of our errands on foot. Sometimes we don't use the car for a week! There is a downside to all of this walking - today Galen fell off a curb and strained his ankle. In spite of that, he told me today that "We need to buy an apartment Uptown." (Maybe they'll take a check??)

At any rate, so far so good. The bumps are smoothing out a bit, or we're getting used to them. It was great to see the rest of the family for a few days, but I think that Kelsey and Sean are about done with not having a mom around.

Everyone's looking forward to Christmas concerts, winter break, skiing. We're looking forward also to holiday visits from Cousin Nancy, Grandma and BA. Sean's race season starts next weekend with a home meet, and the youth orchestra concert is on the 14th. If the chicken pox has finished its Steamboat run, Galen and I are hoping to maybe attend/participate in those events with a weekend at home. (Lia - didja get that?????) We'll have to see...

We're watching the holiday consumer frenzy ramp up over here. I guess it just doesn't mean the same to me anymore. The best gift I could receive this year is sitting over here on the floor playing a hockey game with hair on his head and color in his cheeks. I think that's plenty for my family this time. Now to find a way to keep that idea all year long...

Oh, and I'm extremely grateful for all of you, too. Thanks for sticking around for the rough times.

Love, Deb

Wednesday, November 20, 2002 at 9:02 AM (MST) Brent's Place, Denver

Day 105 Brent's Place

Hello all,

Last Tuesday was a good day, but through that night Galen was gripped with nausea and vomiting. Over the next several days his tummy symptoms worsened. We made every trip to clinic or grocery store carrying a bucket to barf in. Yes, that drew some unwanted attention at times, but it's amazing what becomes normal. We even went to see Harry Potter, arriving with an emesis basin and a roll of paper towels.

Yesterday was the first day in a long while that Galen felt well. Again today he's eating well, and he's lively and engaged. He's planning Thanksgiving dinner down to the side dish, and calling his dad for his Brandied Pumpkin Pie recipe.

His skin and liver are recovering from GvHD, but his digestive system has been under attack for a week now. Imagine the worst 24-hour double-ended stomach bug that you've enjoyed, and add a week to that. That's been Galen's world for the last week.

He's taking prednisone and cyclosporine to tamp down the GvHD. Prednisone, a steroid, has side effects including crankiness! I've seen a little of that already, especially when a writing assignment is offered to him. Raise your hand if you hate Writing Strands...I thought so. Writing Strands is a program of writing used by some homeschoolers. Each assignment is broken down into simple steps to guide the recalcitrant writer along slowly. Galen and Sean both become frustrated by the pace of the assignments, and want to just rush off and write. Some of the simple steps are designed to get kids to think before they write, but I admit that it's a slow process. So it's probably not all the prednisone.

Today's schedule includes a clinic appointment, some schoolwork, some practicing and a visit to the Natural History Museum to see the Liberty Bell exhibit, if it's not crowded. It's sunny and mild here this morning, which I must admit is a consolation of sorts. We're not slogging around in our accustomed November snow and ice. Yes!

There are three new pictures on this site, but still no new ones on the linked site. One of these days...

Think Peace, and thanks for your continued thoughts and prayers,
Love,
Deb

Tuesday, November 12, 2002 at 11:59 AM (MST) Brent's Place, Denver

Day +97

Ok, I spoke too soon. On Friday, shortly after I posted a journal entry here, Galen spiked another fever! In he went to clinic, and up they sent him to BMT. He had a fever, a developing rash from head to toe, and by Saturday, elevated liver enzymes. The working theory is that Galen has Graft vs Host Disease, or GvHD.

GvHD occurs when the graft (Sean's cells) wakes up to the fact that it's in the wrong body. "Whoa, this ain't Sean!" translates to problems for host Galen. There's an upside and a downside to GvHD. It's a serious condition with some unpleasant side effects, but there is good evidence that GvHD comes with a Graft vs Leukemia (GvL) effect. That is, Sean's cells not only attack Galen's skin, liver, and other organs, they also go after any residual leukemia that may still be lurking about after all of this. Definitely a mixed blessing.

So we're back at Brent's Place. Galen feels well, and is back to his schoolwork and practicing. He's on more meds than when we left here on Friday, but we'll adjust eventually. We're considering a drive and a short hike today - it's beautiful outside and I hate to miss such a nice day by staying indoors.

That's the scoop for now.

Martha, I have some new pics and I'll try to get them up sometime today! Thanks for the nudge...

Love, Deb

Friday, November 08, 2002 at 01:59 PM (MST) Brent's Place

Day 93ish

Hello to you,

Time flies when you're having fun, eh? Galen hasn't been back inpatient since the 22nd or so of October. His fevers came down and have stayed away. He has more energy in general, and is starting to think about going home. (More on that below.) Galen's finishing up today's schoolwork by reading about knights. He's particularly taken with the swords and the chivalry, and is comparing knights with Star Wars. He tells me that we've improved our weaponry but lost some of our manners toward each other.

We're laying low here at Brent's for a few days to see what develops with an itchy rash and a cold. We were intending to run up to Steamboat for orchestra rehearsal today, but it's more conservative (!!) to stick around. It's lovely here, cool and breezy, but apparently it's snowing in Steamboat. The storms that are stomping California are supposed to be headed this way, so maybe a Denver weekend is just as well.

Last weekend we went to Steamboat on Thursday night so that we'd be able to attend Mindy's memorial service on Friday morning. Galen played cello during the service with some of Mindy's other students. It was a beautiful, musical social gathering and a welcome if sad homecoming for us. Didja ever notice how the simplest of life experiences raises more questions than answers? Through these months of Galen's illness, Mindy's illness and passing, Bernie's illness and passing, and so many others, we've learned so much. And that's the point of all of this, I guess. 'No pain no gain' may not be appropriate in athletics, but it is in cosmics. (No, NOT comics...rented Spiderman when the kids were here. Loud movie.)

Also last Friday, Galen attended youth orchestra rehearsal for the first time this season while I got to visit with Debbie and Nancy. I was so nice to see everyone, but an overnight was just too short. Josie, Bruce, Anna - I missed you guys and hope you're feeling better. We returned to Denver with Kelsey (for more medical investigations) and Sean (for his and our entertainment) and they stayed for a few days. As of Wednesday, it's quiet again.

On the way back to deliver Kelsey and Sean to David at Kremmling, we listened to "The Thief Lord" on tape. BA sent Galen the book this autumn, and he devoured it, and then she sent the tapes. It's a highly appealing reading of the novel and worth getting if you can find it. It's about the adventures of a group of street kids in Venice, Italy, and the descriptions of the city alone are worth reading/hearing. Galen has a keen interest in Italy, Venice in particular, and so the setting of the story has us looking up the details on a map of Venice and in a guidebook. Thanks, BA, for an inspired set of gifts, as usual.

Galen is scheduled to have a bone marrow aspiration next Wednesday. We'll learn how the graft is doing, and whether he remains Ph-. I think that Friday or so is Day 100, and he'll be able to drop more of his supportive meds around then. At that point, if all goes well, we'll be cleared to return to Steamboat to live. (Scary!) So, wish us luck, or prayer, or whatever it is for you that suggests that important interaction between humans and their spirits. Hopefully we'll be home soon.

Love and gratitude, and especially now, peace,

Deb

Thursday, October 24, 2002 at 01:14 PM (MDT) Brent's Place, Denver

Day 78 or thereabouts

Hello on a gloomy autumn day. It's overcast and cold here in Denver. But we're back at Brent's Place, warm, eating proper food and catching up on sleep and schoolwork.

Galen feels well, and has energy to act goofy and run around the apartment. He's practicing orchestra music right now, and sounds great. He is still having occasional low-grade fevers, but they are fewer and lower. The cornucopia of antibiotics that he has taken over the last month of fevers has zapped his kidneys, so he's off most of his kidney-toxic meds and the BMT team is watching his kidney chemistry carefully. The kidneys seem to be improving daily.

Galen had another bone marrow aspiration a couple of weeks ago to evaluate his graft, and the results were encouraging. He still has 100% donor cells, and is Philadelphia Chromosome negative. Although this test is a snapshot in time, it is certainly welcome news. The next one will be around Day 100, and we hope and pray for continued excellent results.

Sean has games in Colorado Springs this weekend to end his soccer season, and then he'll be staying with us for a week. Kelsey will be here for a few days for her own medical evaluation to try to get a better picture of her headache/asthma/allergy/virus challenges. So I'll have a full and fun house for a while. Yay!

In spite of being captive in room 559 for two weeks, Galen enjoyed visiting with his Onc/BMT friends. Some truly special people work over there at Children's. We want to say goodbye and thank you to Shannon and wish her the best as she heads back east to family, her old job, and a challenging new project. Good luck, Shannon! We'll miss you.

That's the update for now.

Love, Deb

Wednesday, October 16, 2002 at 06:20 PM (MDT) Children's Hospital, Denver

Day 70

Hello all,
I know that it's been a long time between updates. Last Wednesday, Galen was admitted back into the BMT Unit with another fever. We've been here ever since.

His fevers have finally tapered off a bit today, and there's still no strong indication of what may be causing them. Tomorrow he goes for another scan to look for small infections, and he's had tests for many bacterial, viral and fungal critters all week.

Right now he's sleeping and I've finally brought the computer over from Brent's Place so I can do some work and keep in touch. Today Galen was able to leave the hospital on a "pass", and I tired him out running around Whole Foods Market. He's one of the only people I know who can get excited looking at a wall-full of olive oils. We bought some treats to supplement the cafeteria ..uh... food.

Anyway, we're hanging in there. Or here. Galen spends his time on schoolwork, Playstation, and cribbage. He worries about what all these tests will find. Not many of us are examined as closely as a transplant patient, and it's inevitable that the tests will show **something, but at least finding something can hint at an appropriate anti-infection treatment. He enjoys seeing all of his scans and apparently asks good questions when he can.

Thanks for your continued good thoughts for Galen. I know it all helps.

Love,
Deb

Friday, October 04, 2002 at 06:58 PM (MDT) Brent's Place, Denver

Day 58

We're back at Brent's Place. Galen has no fevers at the moment, and we may never know what caused them during the last couple of weeks. He will continue to be on IV antibiotics through this evening, administered here at "home", and we'll see what happens when those are done. Clinic appointment this morning went well (Welcome back, Lia!), and Galen has more energy today than he's had in a long while. His counts are good, and none of his line, snot(sorry) and throat cultures have grown anything interesting.

Galen's Grandma arrived from Boston on Wednesday, just in time to help schleppe Galen and his schoolbooks, games, medical supplies and groceries from BMT to Brent's. Thursday was a "down day" for laundry and grocery shopping (Galen and Grandma stayed at the apartment and played Cribbage) and Friday Galen walked to his clinic appointment, did schoolwork, rode his bike and went out to dinner.

The recent hospitalizations weren't so bad. We got to visit with our nurse and doctor friends, and Stacee and Rob stopped by to see Galen. One of G's nurses, Jean, taught him to knit-perl-knit-perl...et cetera, and reminded him how to cast on for a new project. I'm afraid we'll need another weekend inpatient stay to remember how to cast off...or Roxanne will have to come visit (hint hint hint.)

David, Kelsey and Sean arrive tomorrow from Steamboat with G's orchestra parts in hand. On Sunday, Sean turns 13 (!!!!) and my brother Christopher turns 43, so we'll be celebrating a bit. Sean will be staying for a few days, while Kelsey leaves for Desert Week with her school.

Happy Birthday to my Grandma, my kids' Nona, who turned 97 or 98 on Tuesday, she's not sure. She was the baby of nine kids, and I guess in those days they got kind of lazy about recording births after the first half dozen or so. Actually I think her birth was recorded but the records were misplaced. I appreciate the mystery, myself, and am considering losing my own birth records as I march through my fifth decade. Galen has amused himself lately by pulling out the gray hairs that snake around on my head. "The secret of life is enjoying the passage of time...," sang James Taylor.

Hope you all have as great a weekend as we're expecting.

Love,
Deb and Galen

Sunday, September 29, 2002 at 01:46 PM (MDT) Children's Hospital, Denver

Day 53

Hi y'all,
(Kevin, do you capitalize the Y in y'all???)

Galen's back in the hospital after being out Thursday night through Saturday morning, still with periodic fevers. He feels fine, and is on antibiotics until some source of fever shows up or the fevers go away. He's had frequent line cultures and swabs of his throat and a nasal wash (oh boy), so we wait to see what grows, if anything.

We're bored and we miss everyone, but we're coping. Once I got over missing Kelsey's and Sean's home games this weekend, and missing a performance of a Boccherini cello concerto Saturday night, I adapted once again to the pace of BMT life. Galen, of course, adapted more quickly than that. He's safe, and rested, and is waited on hand and foot. That can't be all bad.

Please keep Galen and our friends and neighbors on 5A/BMT in your thoughts. It makes me sad and angry to think of how many 5A's there are in the world.

Deb

Monday, September 23, 2002 at 11:11 AM (MDT) Children's Hospital, Denver

Day 47

Here's just a quick Galen update: yesterday's low grade temps hit the Call-The-Hospital mark in time for the Bronco's game. Galen went over to 5A, had his Broviac (central line) cultured, received a dose of just-in-case antibiotic, watched the Broncos/Bills game, and returned to the apartment. At 7PM, his temp again hit the mark, and he was admitted to the BMT Unit last night for more cultures and antibiotics. He's fine, feels OK but maybe has a slight virus of some sort. The fevers are already down again.

He'll be under observation for a couple of days, most likely, enjoying Betty Anne's latest box of fun diversions including a box of 92 colored pencils(thanks BA), and complaining about the food. I'll update again when I know anything. It's nice to see our BMT/5A friends again, and Galen definitely feels safe over there.

Hanging in there,

Deb

Sunday, September 22, 2002 at 10:59 AM (MDT) Brent's Place, Denver

Day 46

It's been a busy week! On Sunday last, Galen and I drove to Silverthorne to meet Kelsey, Sean and David. I don't get to visit with Kelsey much these days, so that was a treat. She'd just returned from a foggy and snowy backpacking trip to Grays and Torreys, and had lots to tell.

After a picnic at Dillon Reservoir, Sean returned to Denver with us for a few days. Sean ended up staying until yesterday, when Galen and I drove him to Cheyenne for a soccer game. We stayed to watch the soccer game (an excellent match) and then Sean went back to Steamboat with Penny, David, Taylor and Brady. Galen and I returned to a very, very, very quiet apartment. We thoroughly enjoyed Sean's company, and the boys did their schoolwork together, threw a football, went to a Rapids game (thanks Ally & Rapids) and drove me nuts with Playstation and computer games.

During the week, Galen began cello lessons with one of his favorite Suzuki Institute teachers, Carol Tarr. She is a fun and energetic teacher and Galen's practice improves after he spends time with her.

On Thursday, Ed, Cheri, Jay and Eric came for a visit. Friday, Ed surprised the boys with a visit to a Porche dealer, where they got to test drive the cars!!!

Galen's feeling OK. His aches and pains are slowly resolving with exercise and stretching (thanks Dr Q) but he's had some fevers this weekend. He doesn't feel poorly, but he worries about going back into the hospital. He worries about anything that he doesn't understand about his health. I practice logic and distraction with him, and take the attitude that we'll just have to enjoy something in each day, and wait and see where this journey takes us. Sometimes it's enough to remind him that he's here right now, he's a 10-year-old boy who exists in this apartment in Denver in Colorado and he has (fill in the blank) to look forward to this afternoon, or in the morning, or whatever.

Thanks for your continued thoughts and prayers. Enjoy and appreciate your children! Go out and play with them today. If you get a moment, please give a thought to our BMT friends the Randalls. Their 9-yr-old Hannah was our "next door neighbor" on the BMT unit, and she is quite ill. Hannah's parents initiated me to life as a BMT parent, and Hannah's mom and I escaped from the hospital one night for a taste of Denver nightlife at a nearby restaurant (OK, OK, it was a bar). It was a highlight for me. Thanks, Alicia.

Today some new friends from Boulder are running in a marathon on Maui with Galen's name on their tshirts, along with many other names of leukemia and lymphoma fighters. They dropped off one of their tshirts for Galen to wear today, and he's proudly sporting it. Go Laurie and Kathy!

Anyway, it's a beautiful sunny end-of-summer day here, and I'm going to tear Galen away from his Playstation game to walk or bike around a bit. Enjoy your day!

Love, Deb

Friday, September 13, 2002 at 06:17 PM (MDT) Brent's Place, Denver

Day 37

Hello, or Yo All Y'all (for Kelsey and Uncle Kevin),

I'm writing this short note because Galen would like everyone to know that he went for a bike ride today! He's had a little trouble walking for any length of time because of sore feet, ankles and knees. I thought that maybe a bicycle might be easier on him, and as the third kid in the family he has never *ever* had a brand new bike.

So off we trundled to REI yesterday to try out bikes. After taking about 1/2 an hour to screw up his courage, and after convincing Bill The Bike Guy (a very patient man) to lower the seat *even further*, Galen found a bike that suits him. He got a slick new helmet and some bike gloves in the deal, and sped through his schoolwork today on the off-chance that it wouldn't storm all afternoon.

It didn't, and he wheeled his bike outside an hour ago. It was too late and too rush-hour to walk over to one of the nearby parks, so Galen found a route in among the Brent's Place buildings to test his skills and build his confidence. He rode for about an hour, with a short break for lemonade, and for that hour he was a kid as healthy as any other. (I have digital pictures and I'll entertain requests for them.)

I want to take a moment to thank everyone who sends notes via the Guestbook. Galen loves reading everyone's messages. It makes him feel famous, loved, supported, and slightly embarrassed by all of the attention. It's all good.

Please give a moment in your thoughts and prayers for our friends David, Mindy and Judy and their families. David is recovering from surgery, Judy too, and Mindy continues her battle with cancer.

Love,
Deb

Tuesday, September 10, 2002 at 12:50 PM (MDT) Brent's Place, Denver

Day 34

The past few weeks have gone so smoothly that any bump seems like a mountain. Yesterday Galen was feeling lousy, complaining of headache and some sinus congestion. Around midday he was doing schoolwork and crying about having bad handwriting, so I knew something was up. He never fusses about stuff like that (and doesn't actually care at all about his handwriting!) unless he feels crummy. So I checked for fever (none) and asked him a bunch of questions to see what hurt. He complained mainly of headache. I went through in my head what meds he'd had (the usual) and what food and drink he'd had (nothing too weird) since morning. I tucked him onto the couch with his quilt and his bear/dog, and he snuggled down. A minute later he coughed once and cried out, then ran to the bathroom to throw up his lunch.

My kids know that I hate tuna from a can, and it's worse when you get to revisit it! Guess what Galen had for lunch yesterday. Yup. Those of you who know Galen well know that he throws up pretty easily. He said that when he coughed there was some slime in his throat, and that kicked off his excellent gag reflex, and off he ran to the bathroom. He felt much much better afterward, and was his usual cheerful self.

I threw him in the shower, mopped up the misses with Clorox Clean-Up (yo, Ed) and called the clinic. They wanted to see him, of course. Anything out of the ordinary is cause for concern in a BMT kid, or any kid who's immuno-compromised. Congestion, headache and vomiting all mean serious business. So we walked over to clinic in a light drizzle (such a nice change, actually) and Lisa and Dr Q took a look. He felt so much better already. Even the headache was gone, which Galen attributes to the shower clearing out his nasal congestion. He has an answer for virtually everything, and about his body he's pretty accurate. He seems to think that his Amphotericin nasal spray accounts for sinus/head symptoms. I don't know what to think. They asked that we come back to clinic at 8AM today for Galen to have a nasal wash.

A nasal wash, for the uninitiated, is a very gross procedure. The washer (thank you Jody) holds a thin bit of tubing attached to a suction nozzle and inserts it way way up each side of the washee's nose. It's unpleasant for both the washer and the washee, but it's over with very quickly. I guess we'll know within the next couple of days what grows out.

Anyway, aside from a bit of crankiness at having to get up early, Galen seems fine today. No fever, no congestion, no headache, no drippy nose, no upset stomach. He's had a very good day so far.

The bump/mountain reference means that every small and even normal (for Galen) symptom has to be carefully checked, and that's a discipline that I've never practiced. My "medical" advice to my kids has always been "rest and water and we'll check again in the morning." That just doesn't work for Galen anymore, and I don't know if it's the change in operating procedure or the likelihood that something small means something big that give me constant stomachaches.

So, as much as I'd like to invite all y'all to worry with me, it appears that there's nothing to worry about today.

May your bumps not be mountains,
Love,
Deb

Saturday, September 07, 2002 at 10:35 AM (MDT) Brent's Place, Denver

Day +31

UPDATE:

Galen and I walked to clinic yesterday for a brief visit to check his blood counts and cyclosporin level. His white count, hemoglobin and platelets are all OK. Cyclosporin is a drug that tries to prevent Graft vs Host Disease (GvHD), and its level in the blood must be monitored carefully to manage both GvHD and the drug's side effects. Galen's cyclosporin level has been all over the graph, and it turns out that if you drink alot of grapefruit juice, it can elevate the levels of cyclosporin in your blood. Guess what Galen drinks alot of? Of course. So, no more grapefruit juice for a while.

OK, OK, here's the real update:

While we were there, Dr Quinones came by and mentioned that Galen's Day 28 Marrow results had begun coming in. The preliminary results show that Galen's marrow is made up of 100% donor cells! Whoooo-hooooo! The first thing Galen did was call Sean at Laura's and tell him the news. So, this helps to explain his rapid recovery from the transplant. Nice cells, Seaner! Still we wait to learn about the existence of the Philadelphia Chromosome in the sample.

I'm having trouble writing this update. I think that I hesitate to pass on good news because I know what a rollercoaster this game is. I wonder if I'll ever feel secure about my children's lives again? I guess that's both the blessing and the curse of this whole process.

Over-analyzing,
Deb

Thursday, September 05, 2002 at 12:43 PM (MDT) Brent's Place, Denver

Day +29

Hello and thank you for everyone's continued thoughts and prayers. Check the photo section of this webpage for some current snapshots.

Galen and I are gradually getting into a routine here at Brent's Place. The apartment is bright and comfortable, and we're making nearly constant use of the kitchen! Yay, Galen, for eating so well! Tonight's menu requests include artichokes (high in magnesium), fresh spinach and some sort of fish. Every night he requests fish. He's probably accumulating toxic levels of heavy metals from all the fish, but I'm glad he's done eating out of boxes. It's a crapshoot, either way, eh?

It's challenging to find a routine. Mornings include breakfast, meds, mouthcare, schoolwork and practicing. Afternoons include lunch, more meds, more mouthcare, errands (to buy fresh fish and vegetables!), and schoolwork. Evenings include dinner, meds, mouthcare, shower, linecare and reading. The apartment needs to be cleaned frequently, by agreement with the management, and dishes and laundry must not be allowed to sit undone for the day. Cleaned means cupboards and surfaces wiped down, switch plates and door handles wiped down, floors Swiffered and mopped with vinegar or ammonia, and bathroom cleaned with bleach. These apartments were designed and built with regard to the health concerns of recovering BMT patients, so clean is the highest priority. Into the chores, schoolwork and practicing, add clinic visits, frequent snacks, and exercise/playtime, and the day seems packed! It reminds me of being home with toddlers. I manage to get some work done on my own stuff late late late at night, which is back to normal for me.

Yesterday Galen couldn't eat until after his clinic appointment (2PM) because he needed anesthesia. It was Day 28, a momentous day in the life of a transplant patient. On Day 28, in addition to bloodwork and a physical exam, Galen had a bone marrow aspiration. Under anesthesia, a needle was pushed into the bone of his right hip. Marrow was withdrawn for examination and testing, and then a bit of bone was removed for biopsy. It all took less than half an hour. This is how the success to date of the transplant is assessed. The lab can look for whose cells rule in the bone marrow, and the hope is that Sean's cells rule by a long shot. Dr Quinones did the bone marrow procedure yesterday, and he looked at a sample of marrow under the microscope. He reports "robust" marrow, and so far everything looks good. The results of further testing should be available late next week. They'll be able to determine the exact measure of Sean vs Galen cells, and they'll be able to tell if any of the cells have the Philadelphia Chromosome, the bit responsible for Galen's leukemia in the first place. We want all Sean and no Philadelphia Chromosome, thank you very much.

Medically, Galen has a few small discomforts. His skin is peeling in some places for some unknown reason, and he's a bit itchy. He's being treated for a possible yeast infection of his skin. He has a mysteriously sore left foot and his right hip is sore from the bone marrow aspiration. His electrolyte balance isn't perfect, and needs periodic adjustment through diet and supplements. Overall, so far, he's a pretty healthy guy.

Last weekend was full of visitors. Kelsey, Sean and David came for the weekend. On Saturday, David looked at motorcycles and Galen and I got to visit with the kids. Both K and S had colds, so they opted to wear masks in the apartment and in the car with Galen (see photo). They stayed at St Christopher House nearby on Saturday night because of their viruses. Sunday Galen and David went across to a park and played football while the big kids did homework. We got to go to a Rapids game on Sunday night. It was fun to watch Galen with the other kids - he hadn't seen them for nearly a month. He was thrilled to be with them, and animated and funny.

We also got to visit with Nancy and Sam, and with Millie and Gardner. Sam (ahem) drove Katie to the airport for her return to school, and Nancy suffered along for the ride. Kelsey, don't get any bright ideas - you've got a year yet! They dashed by for a quick hello and to share some Steamboat news before heading off to Meeker. Galen enjoyed hearing about the exploits of the Nordic Combined team.

Millie and Gardner and their little basketball came by in the afternoon. They just blended into the general commotion so well that when it was time for us to leave to go to the soccer game, I was surprised to not find them in the car with us! It's like having my brothers and sister around. Thanks, guys.

We love reading your emails in the Guestbook. Thanks for writing and thanks for checking in and keeping up with Galen's progress. We're doing OK. Some days I struggle to NOT worry, and I know that Galen goes through a similar process. I try to answer his anxiety about his health and his future with listening, routine and normalcy. Nick's saying, "Strive for normalcy!" is something I hear in my head EVERY day. Thanks, Nick. I know that's not exactly what you had in mind, but it works for me. You never know who and when your words may touch.

I have to write these more often. They're WAY TOO LONG weekly, I know. Thanks for hanging in there.

Love, Deb

Wednesday, August 28, 2002 at 9:40 PM (MDT) Brent's Place, Denver

Day 21

Galen was discharged today with considerable fanfare! We were briefed by the nurses, the doctors, and the pharmacists and given plenty of instructions to follow. While Galen ate lunch, I ran to the store to stock our new apartment with food. He wrote me a grocery list, and I hurried through the store picking up shrimp and cocktail sauce, Annie's AND DeBoles Mac and Cheese, Rice Dream, fish, gummy snacks, spinach, hummus, garlic, salad fixings and other assorted favorites.

The staff threw a Discharge Party complete with presents and chocolate cake (see new photo), and some of Galen's favorite docs and nurses waved him out of the Bone Marrow Transplant Unit. We loaded up two wagons with medical supplies, schoolbooks, and roughly the first eighteen Hardy Boys mysteries and wheeled out to the parking garage. Galen couldn't resist returning the wagons and stopping by 5A once more to peek through the windows.

So here we are at Brent's Place (see new photos, new address and phone number, and new link below) and we've finished unpacking, dinner, meds, shower, mouthcare and linecare. Galen's reading on the couch, and I'm updating all y'all (yo Uncle Kevin) and life is good for now.

Galen has a clinic appointment on Friday, so tomorrow's a free day! He has big plans: get up, eat a real breakfast of eggs with spinach and garlic (a Dr Dave's omelet from the In-Season), read a bit, play Civilization III, and start schoolwork. My only goal tomorrow is to go buy some beer for the fridge and a nice bottle of wine for the cabinet. You don't get a glass of wine with dinner at Children's, unfortunately. I don't even think there's grape juice.

I'll keep updating this website as Galen continues his recovery. We are scheduled to be here until roughly Day 100, with infection, Graft Vs Host Disease and count fluctuations high on the list of things to avoid. We will have frequent visits to the clinic for labs and checkups. Most BMT patients are readmitted at least once to deal with low counts, high fevers, and infection evaluation. I feel reasonably safe to have Galen out of the hospital, especially since we're within walking distance.

We'll be in touch. Hello to the LWPS camptrippers. Has it rained yet??

Love,
Deb

Tuesday, August 27, 2002 at 9:40 AM (MDT) Children's Hospital, Denver

Day +20

Well, they are finally sick of us and have decided to hasten Galen's discharge. Galen's counts have been climbing slowly and steadily, and he's otherwise mostly healthy. So, last night Galen was given GCSF, a compound that encourages white blood cell development, and his counts have taken off! He WBC is 5,900 and his ANC jumped from 393 yesterday to 3859. This probably means a pass out of the hospital for the afternoon tomorrow, with possible discharge on Friday.

There is one potential glitch: a couple of nights ago Galen started to have some pain when he pees. The staff is looking into it. He's off all IV hydration now, and the nurses plug him back in only to give meds if he needs them, so that means he must drink all of his fluids. This should help the peeing problem in any case.

Other than that, Galen is healthy and happy. Kelsey and Sean started school yesterday, and so Galen began his schoolwork too. He spent half an hour yesterday morning making himself a schedule and then just sat down and did it! He's assigned himself work from 9:00AM to 2:30PM, with an hour off for lunch. An experienced homeschooler, he's blocked off just the right amount of time for each subject, and for the second day in a row he's hard at it.

Thanks for your continued thoughts and prayers. So far it appears that Galen is weathering the transplant process nicely. Next week (I think) he will have a bone marrow aspiration to retrieve and test some of the cells growing in there. We are hoping, of course, that the testing will show 100% donor cells. (Go Sean!)

BREAKING NEWS: As I wrote that last paragraph, Angie (the BMT PA) came in to instruct me to call Brent's place. They want me to move over there this afternoon so that they can DISCHARGE Galen TOMORROW AFTERNOON!!! Then Deb the nutrition expert came in with her discharge instructions. Wow. (Now what do I do???)

Love,
Deb

Thursday, August 22, 2002 at 11:22 AM (MDT) Children's Denver

Day +15

This past week contained many challenges for Galen. His mouth has been sore enough to require IV morphine in order to eat meals, but he's plugged along eating anyway. He enjoys morphine, and I think sometimes that eating is secondary to the euphoric feelings that the morphine produces! (Have to have morphine to eat?? OK, I'll eat. Bring it on!) By the end of last week, the pain in his mouth was waking him up at 7:30AM, then at 6:30AM, and once even at 5:30AM. Over the last couple of days the pain has gradually eased, so that yesterday's single small morphine dose was all that Galen required. As his mouth heals, his calorie intake increases. I go to the market nearly every day to satisfy some craving or another.

He had transfusions of packed red blood cells every couple of days through Saturday. His hemoglobin and platelet counts stayed steady until Tuesday, when he appeared to be actually making red blood cells and platelets! He hasn't had a transfusion since Saturday. That points to some marrow recovery already, yay.

Then on Thursday evening before bed, Galen said that he had a fever. Nothing registered on any measuring device, though, so we decided that he was hot and sleepy, and off to bed he went. By Friday, he had measurable fever, and he was alternately hot and cold throughout the weekend. Fevers require a specific protocol: every 24 hours that he has fever, his central line is cultured, and he is given antibiotics to cover any potential infection that may show up. Depending on how he "looks", other cultures may be done. He had a nasal wash to culture critters from his nose, and THAT meant going back on isolation just in case. His last fever was on Sunday evening, and he's bounced back completely since then. He was taken off isolation yesterday just in time to play air hockey with Jay, and run on the treadmill again.

Over the weekend, his WBC (white blood count) came up a little bit. Usually the first counts to recover after Stem Cell Transplant are the white cells. They inch up little by little, and at some point there are enough white cells of the right type to prevent some infections. His ANC (a measure of a person's ability to fight infection) has gone from virtually zero to today's high of 243! When he hits an ANC of 500 for a couple of days in a row, he will be allowed to leave the hospital for a couple of hours. When ANC reaches 1000, he is eligible for discharge.

That brings me to my punchline: in addition to his current reasonably good condition, to be discharged Galen must have a consistently 1000+ ANC, he must require no IV anibiotics, no IV morphine, and he must be drinking on his own for hydration. Yesterday afternoon, Pharmacy received a list of Galen's meds in preparation for his discharge. His meds will begin to come to the BMT in the forms that he'll take when he gets out, and I'll be taught to prepare and administer them. Last night, Galen was removed from IV Cyclosporin and given oral Cyclosporin instead, in preparation for his eventual discharge. I just thought that the medical staff thinks very far ahead, but...

Today Galen's IV fluids have been cut back, and he's to be off all IV for 8 hours each day now. He's been instructed to drink 600cc of fluid by himself every day, and he's been told that if nothing yucky happens this weekend, they're looking at DISCHARGE early next week! So far his only trouble today is a crampy stomach. He thinks it's because he's having to (getting to) drink more than usual.

I continue to take one day at a time, with caution, and to enjoy the time that I get to spend with Galen. We'll see what the weekend brings, and we'll see what next week brings. When he is discharged, we will likely be moving in to an apartment at Brent's Place, which is located right here next to the hospital. It's closer, and has been specifically designed as a safe and clean space for kids recovering from transplants. I'll find out in the next day or two whether something's available at Brent's, but we've been on the list for months, and they are expecting us. Angie the PA has already alerted the proper people to Galen's upcoming discharge.

We'll get there when we get there.

Thanks for all your thoughts and prayers. Galen loves reading the Guestbook messages. Please spare a thought today for Mindy and her family. Mindy is fighting the tough fight against cancer, too, and could use a prayer or two.

Cheri and Jay came down Tuesday evening and stayed through Wednesday, while I went home overnight. I attended family orientation at Kelsey's new school, and spent a bunch of time getting Sean's schoolwork established for the next few months. It was wonderful to be back in Steamboat. It rained and it was cold enough for a jacket! I drove back to Denver in a downpour while Cheri and Jay returned to Steamboat. Cheri and Jay and I talked on the cell phones as we hurtled in opposite directions on I-70.

So for all of you who've waded through this massive "note" (I know I should update more often, and I promise I'll try, but I just hate to update when I can only report yucky stuff), please scroll down a little bit to the Links area and click on the link that's there. It should connect to a photo gallery. I'll add to it as I get around to it.

Love to all, and Happy Birthday yesterday (Oreo Day) to Jerry,

Deb

Wednesday, August 14, 2002 at 12:38 PM (MDT) Children's, Denver

Day +7

Galen was removed from isolation today. His cultures all came back negative for nasty bugs, and so he can venture out from his room now. He's out on the treadmill as I write this.

The biggest challenge of the last few days has been a sore mouth. Eating is painful, and food still has no flavor, so it's becoming a pointless exercise. But one week post transplant still finds him getting his nutrition from food instead of TPN (Total Parenteral Nutrition) which is unusual.

On Sunday, Day +4, when Kelsey and Sean asked Galen what he'd been doing, he replied, "Wallowing in misery." Dramatic, yes, but not strictly true. He's had visitors and there's no shortage of things to do. For instance...

On Monday, he tried out some liquid morphine for the mouth pain. The morphine helped some, but it looks alot like blue jello. So after taking the morphine, he took the blue jello (blue jello??? I'd like to read that marketing study..) from his lunch tray and refilled the syringe. Then he told Grant (the lucky nurse who drew Galen as his patient that day) that he'd given him too high a dosage. They know Galen by now, and he watches what they do very carefully. He periodically calls the nurses when he notices that a medicine dosage has changed. Galen got a good laugh out of it, and hopefully Grant did too.

Anyway, blue jello in a syringe led to requests for more syringes and more colors of jello, which Grant and Carol happily provided. The result was this lovely jello painting on aluminum foil of mountains in the sun. It took hours! We're sending a photo to Food Service as a hint about the blue jello.

All continues as expected. Galen's remaining hair is sparse and wispy. He has a cute little bald head! His spirits are still good, and we wait.

Thanks for your continued thoughts and prayers. It's all good.

Love, Deb

Saturday, August 10, 2002 at 10:24 AM (MDT) Children's Hospital Denver

Day +3

Galen enjoyed an uneventful Day +2 yesterday. His counts are low, as they should be now, and he's got virtually no immune system until the stem cells engraft. In a couple of weeks we'll start to look for signs of engraftment, and in the meantime we wash hands alot. He must eat a low bacteria diet (no produce, no undercooked food, no spices, no aged cheeses...) and almost everything that enters his room has to be wiped down with germicide. But medically he's doing well so far, and mentally he's only bored sometimes.

Galen's daily schedule includes many nurse visits to take vital signs, draw blood, fiddle with beeping equipment and change IV bags. He gets two doctor visits per day so the docs can poke and view the patient and ask and answer doctor-type questions. He is expected to exercise a few times a day on the unit treadmill or stationary bike or just walk around the BMT unit, and he takes a daily shower or bath.

There are several chores, too: mouthcare has to be completed three times a day, menu for the next day has to be filled out, nurses have to be annoyed with "Kick Me" signs and squirt guns, and meals and snacks have to be eaten and recorded.

In between his required duties, Galen races cars on the Playstation, does some schoolwork, listens to music, sings, reads Hardy Boys, plays cards, sends Mom out into Denver traffic (where a 15 minute errand takes about an hour) for special treats. I fall asleep exhausted before the news, but Galen seems to weather his schedule quite well.

So far so good, but we take nothing for granted. We still expect to experience mouth and gut sores and opportunistic infection. The diarrhea part of the program began around 3AM this morning and has only just eased off a bit. Radiation and chemotherapy damage the lining of the gastrointestinal system, sometimes causing liquid stools. The worst part is that when a kid gets diarrhea, he/she is automatically put on isolation, which means Galen's confined to his room for a few days until the lab says he has nothing contagious. A contagious infection, while annoying and potentially disastrous for the patient, can also place the other patients on the unit at risk. For Galen, the only real change in routine is taking exercise in the room instead of out on the treadmill, and pestering the nurses a bit less.

Anyway, that's all for now. Have a swell weekend, and PLEASE spend some time with your kids! Ya nevah know.

Deb

Thursday, August 08, 2002 at 11:03 PM(MDT) Children's Hospital, Denver

Day 1

So Day 0 has come and gone. Thank you, everyone, for all of your thoughts and prayers. I pass the laptop over to Galen every day so he can read your best wishes for him. You know that little smile he gets when you really want to talk just to him, not to Mom, or Sean, or Kelsey or the cats? It's kind of a shy and happy smile and he kind of ducks his head a little. Well that's what happens when he reads your messages. I **know** that he feels the power of the love and esteem that his community has for him. You guys are awesome!

The stem cells arrived with some ceremony. After the preparatory work was done (including premedication with Benadryl to prevent an immediate allergic reaction to the cells, I think) and Galen's contrary reaction to the Benadryl subsided (he gets agitated when he's supposed to get mildly sedated) the room filled with people. There were three nurses, a nurse practitioner, the blood person with the cells, three doctors, the dad, the patient, me. Ed, Jay and Eric arrived just in time, covered head to toe in gown, mask and gloves just in case. It was very much like a party, and I enjoyed visiting with old and new friends!

Galen was a bit cowed by the crowd, and practiced his normal avoidance maneuver - he curled up and dozed a bit. The first tiny bag of cells was hung and began its drip. For the first little while, he napped while the rest of us chatted but eventually he sat up and joined the party. The kids called from New England while the second bag was hung, and Galen visited with Sean long distance as Sean's cells dripped into his Broviac. Wierd.

The actual drip took less than an hour, and most everyone went back to work, leaving a bit of a vacuum behind. After the buildup to this big day, the actual delivery of the stem cells was over with just like that. On one hand I wanted to hand out wine and little wrapped gifts to each participant, and on the other hand it was just another procedure on the Bone Marrow Transplant Unit.

Day 1 was less eventful, as we settle in to wait for Galen's bone marrow to recover. It's a long wait, and we're learning how to stave off boredom. Galen is beating me at cards on a regular basis, and we're listening to some music and talking alot. Right now he feels well, but the weeks to come hold such lovely surprises as mouth and gut sores, fevers, bone pain. We'll hang in there with your love and support.

Y'all hang in there too.

Love,
Deb

(Kelsey tells me that the plural of "y'all" is "all y'all"...the things we learn from our kids!)

Wednesday, August 07, 2002 at 07:04 AM (MDT) Children's Hospital, Denver

Today is Day 0. There's a sign on the wall all covered with stickers that says "Happy Transplant Day, Galen!!" We're in a room on the east side of the building, and sun is streaming through the blinds. Galen is sitting up eating string cheese, cream of wheat, and Cheerios with banana and milk. Sean's stem cells should arrive around 11AM hospital time. Apparently the stem cells are preserved in a solution that smells really bad, so I was sent out into the world yesterday to get alot of mints for Galen and his visitors to suck.

Here are some notes from the last few days:

Day -5: Galen was admitted on Friday to the Bone Marrow Transplant Unit at the very end of 5A through heavy double doors. To enter the unit, hands must be scrubbed for 2 minutes and a gown must be worn over street clothes. There are booties for dirty shoes, and masks and gloves for visitors who need them. Galen was given a set of enormous scrubs to wear, and settled into his room.

A couple of hours after being admitted, Galen had a lumbar puncture to administer some of his last chemotherapy. His spinal fluid was checked and is still clear, yay.

We settled in to hospital routine, which includes daily showers, mouth and skin care. Many of the bugs that Galen is susceptible to already live on or in him. Showers and skin care cover most of the surface-dwellers, while mouth care tries to mitigate the germs that live in his gastrointestinal system. Three times a day, he brushes his teeth, sucks on an anti-fungal lozenge, swishes and spits an antibacterial mouthwash, and takes medicine to keep other gut bugs down. He smears lanolin on his lips to keep them healthy.

Galen's nurse tonight was Jon, a friend from an earlier stay at Children's. They share an interest in Gran Tourismo 3, and when I went back to the hotel to sleep they were happily playing on the Playstation.

Day -4: Deb, Nick, Mary and Olivia came to visit! They stayed until David arrived,chatting with G about skiing and swim team. Galen received the first of six doses of Ara-C, a DNA disruptor that messes up cancer cells. David left in the afternoon, and I went back to the hotel after Galen went to sleep in the evening.

Around midnight the phone rang. "Hello, this is Jon from the hospital..." I heard and was instantly awake. Apparently Galen got up to pee and couldn't find the plastic urinal that he pees into so he partially unplugged his IV pole's three plugs and walked over to the bathroom, dragging the pole. He was still asleep, and the pole and cords got caught somewhere just short of the toilet. It sounds like he peed, mostly in the potty, but in trying to reach the toilet he disconnected his fluid line. Luckily Jon heard some clattering and went in to check it out. He got Galen cleaned up and reconnected and tucked him back into bed. After talking to a sobbing and mostly confused Galen, we decided that Galen would be more comfortable if I sat with him, so I returned to the hospital.

I've stayed here at night since then. Each room is equipped with a lazy-boy sort of chair that mostly reclines. With a sheet, blanket, and pillow I can be reasonably comfortable and Galen sleeps much better. During the day when he's feeling well, I escape for some downtime and a shower at the hotel. It all works.

So that was Day -4.

Day -3, -2, -1: On Days -3 and -2 Galen recieved a dose of another DNA-disrupter, Cytoxan. Sounds gross, and it is. It's particularly toxic to bladders if it is allowed to sit for any length of time, so everyone who gets Cytoxan also gets a Foley catheter placed to continually drain his bladder. These few days were awful for Galen. The Foley placement was painful and frightening, and he required sedation and pain meds just to get through the days and nights. Not only was the Foley painful and itchy and scary, the prospect of having it removed kept Galen preoccupied and worried. Tuesday at 11AM he was given a sedative to calm him before the catheter removal, and it was removed without incident. So the Galen that we all know and love is back, though with considerably less hair, and he's comfortable, cheerful, and HUNGRY.

And so we arrive at the big day. Thanks to everyone for their thoughts and prayers. I know it helps.

Love, Deb

Thursday, August 01, 2002 at 08:26 PM (MDT) Denver, CO

We've been in Denver since Monday, and Galen has completed the Total Body Irradiation part of his treatment. The protocol is counted by day, with Day 0 being the day Galen gets Sean's stem cells, and with the preparative regimen beginning on Day -9 which is 9 days before the stem cell transplant. So here's where we are:

Day -9, Monday 7/29/02
Left Steamboat around 5AM so that we could hit Silverthorne before the construction started. Galen had a clinic appointment to check counts and get a brief physical exam. Then Galen and I took Kelsey and Sean to DIA to fly to New England for a visit before school starts. (DIA security was an experience - I didn't realize that 9/11 has changed our culture to the extent that we must frisk children in order to feel safe. Both Kelsey and Sean and their carry-on bags were searched, Kelsey twice, after which I was not allowed to kiss them goodbye. They were among a half dozen children who were searched, while adults far more capable of mayhem walked freely onto the airplane. I'm afraid that I was shocked and angry and not very quiet about it.)

Day -8, Tuesday 7/30/02
Day -7, Wednesday 7/31/02
Day -6, Thursday 8/1/02
Arrived at PSL Radiation Oncology for Galen's first treatment at 7:15AM and then again at 1:15PM. He was positioned just so and left alone in a room to be still while a machine raged around him. He chose the music of Sugar Ray, Smashmouth, Vivaldi and Mozart to listen to during the treatments and did just fine, with the excellent help of Angel and David. In between treatments, we went back to Children's to the Oncology Clinic for IV fluids, lunch and Playstation (Thanks alot, Ralph!!), and the good company of the Clinic staff.

Day -5, Friday 8/2/02 Tomorrow Galen will be admitted to the BMT unit to receive several days of high-dose chemo, and Day 0 will be Wednesday.

More details as we live through them...

Please pray that Galen can get through this with only the most manageable complications.

Thanks for your continued thoughts and prayers for Galen and for all kids struggling through life-threatening illness.

Love, Deb

Saturday, July 27, 2002 at 10:26 AM (MDT)

Steamboat Springs, CO

Before I write this update, I want to ask for a moment of your best energy for some of our friends. Please say a prayer or spare a thought today for little Anna Marie at the very beginning of her life, and for Bernie at the end of his, and for Mindy in her fight for hers.

This will be our last weekend in Steamboat for a while. While David, Kelsey and Sean hold down the fort with work and school and the care of cats and hummingbirds, Galen and I will go to Denver to begin his stem cell transplant process.

We leave Sunday evening, and he has a clinic visit on Monday to check counts and get a physical exam. Then if all of that checks out, Tuesday, Wednesday and Thursday he'll have TBI (total body irradiation) in fractionalized doses, twice a day. In between, we'll get to hang out at Children's Oncology Clinic for hydration and to guage Galen's tolerance for the radiation. On Friday he'll be admitted to the Bone Marrow Unit.

(Nothing's etched in stone, as always.)

I'll be posting journal entries frequently now that we're getting serious again. Meanwhile, Galen's been healthy and happy, and he's had a fun summer. He's looking forward to BMT because he gets "...to meet the people who are experts on cancer and experts on bone marrow..." and because there's a treadmill on the unit and because he gets to eat processed food. Oh boy.

Thanks for your continued thoughts and prayers.

Love, Deb

Wednesday, July 10, 2002 at 10:08 AM (MDT)

Steamboat Springs -

Hello all,
Galen's radiation (TBI) and admission to the Bone Marrow Transplant Unit has been delayed until the end of the month. On July 4th, both Sean and Galen developed fevers and cold symptoms. Last Friday, as a matter of course for BMT kids, Galen had a nasal wash to gather some, well..., snot to test for viral infection. The sample has indeed grown a virus which is probably para-influenza. This is a virus that could be dangerous to a kid with no ability to fight infection, and the best action is to allow the virus to run its course, and then admit Galen to BMT when he's free of it.

We're running down to Denver on Friday for another nasal wash and to check in at the clinic, so we'll know in a week or so if the virus is still around.

Meanwhile, Galen gets to have his tenth birthday at home instead of in isolation, and we get to watch Kelsey and Sean play in the Steamboat Mountain Tournament! We'll also be around to meet Josie and Bruce's baby when it's born in the next week or so. Yay!

I'll post a final schedule when I know one.

Thanks to Bob Milne for letting G jump in to his soccer practice last night. Galen played an hour of 3 v. 3 with Jay and his teammates. He was sweaty and exhausted, which is just as it should be after an evening of soccer in summer in Steamboat. Such a normal thing...and one we take entirely for granted.

That's all for now,
Deb

Saturday, July 06, 2002 at 9:22 PM (MDT)

Steamboat Springs - Hello to all - I've put a couple of pictures up on this site!

Dani, thanks for your care package! What a nice surprise, and your gift choices were perfect. BA, thanks for your care package! I was delighted to see the milagro piece again. We'll put it to good use - it seems to have worked once already.

We're home again after a week of pre-BMT testing. Sean, Galen and I left for Denver on Friday, June 28th for a clinic day. Galen saw the dentist, went to the Oncology clinic for lab work and cultures, had pulmonary function tests, a neuropsychology workup and chest and sinus x-rays. That was just Galen's Day 1 of testing. Sean had a mid-morning appointment to get the first of several injections of GCSF to stimulate his stem cell production prior to collection. We ended up spending the weekend in Denver attending to other life details like broken mufflers on the car and just plain tiredness.

Sean received more GCSF on the weekend, and then on Monday afternoon he had a catheter placed in his upper right arm. He enjoyed being pushed around the hospital in a wheelchair after the line placement. While Sean recovered from anesthesia, Galen met with various folks to learn more about the nuts and bolts of stem cell transplant. He spoke with the child life specialist, a dietary specialist, and his BMT team members. Then he dashed off to the eye clinic for an exam.

6:30 Tuesday and Wednesday mornings, Sean began the process of being hooked up to the machine that goes ping. The PICC line in his arm had two "ports" at the end of it. Through one port, blood was sent to the machine, which drew it into a spinning cylinder. The blood separated into layers, and the middle layer, which contained the stem cells, was drawn off. The rest of Sean's blood and some additional fluids were returned to him via the other port. He had to sit in a bed for close to 10 hours on Tuesday, and 8 on Wednesday, being still and polite, and trying not to get his arm in a position that kinked the PICC line. He got to know Jamie and Dr Le pretty well as they monitored him and their machine closely. They sat through some very loud movies together.

Meanwhile on Tuesday, Galen had a spinal tap and bone marrow aspiration, and had some dental work done under general anesthesia. Wednesday, he met with the radiation oncology people and toured the radiation lab in a hospital near Children's. Then he had an EKG and stress echo at the cardiology lab at Children's. In between appointments, we popped in frequently to visit with Sean in the Blood Donor Center.

Amanda (THANK YOU THANK YOU THANK YOU) brought chocolate and collected Sean to go home to Steamboat on Wednesday afternoon. Galen and I stayed in Denver to finish up his Friday appointments. On Wednesday evening, around 9PM, Galen and I rushed to the door of our hotel room. The sky across the parking lot was full of fireworks! (Good pick, Cyndi!!) We watched for half an hour, listening to a nearby bar full of people singing along to patriotic songs. It was a GREAT show.

Thursday was a down day, which was fortunate. Both Galen (in Denver) and Sean (in Steamboat) came down with fevers and cold symptoms that day. Galen hung around in bed and read a bunch of Hardy Boys books. I paced back and forth and did laundry and dishes and took temperatures.

Friday, we completed Galen's pre-BMT testing with some more "talk appointments" and a pulmonary consult. So far, as test results trickle in, all is well. Both Galen and Sean can be proud of their marathon week. They really hung in there during some uncomfortable and trying days. Sean's stem cell harvest was excellent, yielding plenty of the right cells with minimal complication. Galen's overall health entering BMT is as good as it can be.

We get to spend the next week in Steamboat, and then G and I are off to Denver for radiation and to get settled into BMT. Galen's birthday is the 20th, and he'll be on his second day in isolation on the Bone Marrow Transplant Unit. Please send him your best energy on the 20th to liven up his birthday!

I hope everyone is enjoying the holiday weekend with family and friends. We're just laying low and trying to have a normal weekend and week.

Thanks for your continued thoughts and prayers - all of that energy helps Galen feel supported and strong as he faces each new challenge.

Love,
Deb

Wednesday, June 26, 2002 at 10:20 AM (MDT)

Steamboat Springs - Finally, an update! I was reminded yesterday that my usual "no news is good news" may not apply in this situation. No news could mean just about anything. Thanks, Anne, for your usual wisdom.

Galen's had a remarkably good few weeks. Early in June, he attended the Music From the Heart benefit, grinning from ear to ear all evening. He played in two trios, and visited with the 75+ musicians and many many other friends who attended this event. The entire evening was a moving and special tribute to the strength of community for which we are so grateful here in Steamboat Springs. Thank you so much to the organizers of the benefit. Thank you seems so puny against the magnitude of what you guys created.

Galen's felt well enough this month to kick a soccer ball around, play basketball, learn some new cello pieces, and travel to Snowmass to visit some of his master teachers at Suzuki Institute. He's really been able to experience the joy of being nine in summer.

Last week, though, Galen started to feel crummy. He was achy, had headaches, was dizzy, had low grade fevers and felt a bit nauseous. (He's learned many ways to say vomit, but I think the current favorite is "up-chuck." He reminds me every day that you have to giggle.)

This past weekend, though, he was awake and restless and crying in frustration that he couldn't sleep. He was running a slight fever, which spiked on Sunday night around 9:30PM. I waited and took it again at 10:30, and it was over the limit at which I'm supposed to check in with Denver Children's Oncology. The on-call doc sent us to Yampa Valley Medical Center's emergency department for labs and IV antibiotic to fend off any developing infection. When his lab results were faxed to Children's around 1:30AM, they elected to admit him. His ANC was extremely low, which put him at risk for any infection that he happened to encounter.

After the antiobiotic drip was finished, we left the hospital in Steamboat and drove straight to Denver to get him admitted at Children's. That was a tough trip without sleep. I wasn't sure that I could stay awake for the drive, and there were times when I found myself doing about 35 on roads that I comfortably drive at 75. Got there, by some grace, but it was scary.

When we walked through the doors of 5A around 6 in the morning, Galen was greeted warmly by some of his favorite caregivers: Dr Todd, Laura S, Jon, and Loren. He relaxed as soon as he saw them. They tucked him in and began hydrating him, gave him lots of antibiotics, fixed his central line which wouldn't draw all week, and let him rest. On Tuesday morning, his counts were still low, so Tuesday afternoon he was given a transfusion of red blood cells. Dr Albano, after careful consideration, OK'd his discharge after the transfusion. His ANC's still really low, so he can't be around alot of people and everyone at home needs to wash hands alot, but he'll be OK. We got home last night around 10PM.

I was struck by Galen's response when we arrived at Children's. He was immediately calm, relaxed, and somehow content. In a very short and intense time, that place and its people have become central to him. I guess that's not unusual, and I am grateful for the warmth and love that the entire 5A (and clinic) staff extends to their sick kids.

We won't be home for long, though. Bone Marrow Transplant is coming right up.

Schedule so far is this:
Friday, Sean has an appointment at the clinic in Denver to get the first of several shots to boost his stem cell production. Friday, Galen also has the first of his pre-BMT workup appointments.

Weekend, we'll be in Steamboat. I'll be giving Sean his weekend shots ... he's of course thrilled. "Mom, are you SURE you know how to do this??"

Monday we return to Denver. We'll be down all week, outpatient. Galen has lots and lots of tests and Sean will have his stem cells harvested on Monday/Tuesday or Tuesday/Wednesday. Monday's AM session for Galen is a spinal tap and bone marrow aspiration. Those tests will identify whether he's still in remission. Please pray to whatever force you believe is responsible for intervening in these things that Galen's still in remission. I know I will be. (Thanks Fr David.)

Weekend, back in Steamboat again.

Following week, Galen will complete any remaining testing at Children's, then we're back to Steamboat until the 16th.

July 16th, 17th, 18th he'll receive radiation in Denver as an outpatient and on the 19th he'll be admitted to the Bone Marrow Transplant Unit. Then he gets 5 days or so of high-dose chemotherapy. He gets Sean's Stem Cells on or around the 24th or 25th.

That's all I know right now, and it's subject to change with test results and BMT scheduling glitches. Stay tuned...

Thanks for your continued love and support. Galen reads the Guestbook every few days, and your messages mean alot to him.

Good luck to our friend Gale, who's on her way to Tulane in July. We'll miss you!

Love and thanks,
Deb

Saturday, June 08, 2002 at 03:54 PM (CDT)

Steamboat Springs - Tonight is the Music from the Heart benefit gathering! Thank you Diane, Martha and Vicky, and all of the musicians and support crew out there. Galen's getting dressed and gathering music and cello together as I write this. He feels crummy but excited, and he's determined to enjoy this evening of music.

The side effects of Galen's chemotherapy include low blood counts. Yesterday he had low-ish white counts and a low hemoglobin count. Hemoglobin carries oxygen around your body, and if you have too little of it, you feel headachy and dizzy and become short of breath easily. Since his counts are expected to drop further in the next few days, he'll need a transfusion of packed red blood cells. It's scheduled for Monday morning first thing, but we may have to go earlier.

Hopefully he will feel well enough to enjoy his friends and the concert tonight, but we may be bolting for Denver for a transfusion if he starts to feel worse.

Thank you to Edythe for meals, dishes and laundry for the past two weeks! I'm not sure what we'll eat or wear when you leave on Monday. Come back soon!!!

Deb

Tuesday, June 04, 2002 at 11:36 AM (CDT)

Steamboat Springs - REMINDER TO ALL...this Saturday, June 8th, at 5:30PM at UMC, please join us for MUSIC FROM THE HEART. A free chili dinner will be provided for everyone, as well as a great evening of music. Call Diane at -5877 or Vicky at -3042 for info.

Finally!! With lots more help last weekend (thank you Nancy Collins, Edythe, Vicky, Amanda, John, Madison, Sue, Patricia, Drew, Reed, Dan and Jill, and Jeremy) we've moved into Karen and Ron's house. It's a mess, boxes everywhere, but thanks to Grandma Edythe there's also food and thanks to Amanda and David there's always wine or beer.

Clinic visit yesterday in Denver, and all's well. Galen's feeling much better during this second month of Consolidation chemotherapy. No headaches, no nauseau, no fatigue so far. He attended Kelsey's 8th grade graduation at LWPS, and has helped move boxes and set up his room. He feels well enough to mess with everyone a little bit! He's back to practicing cello and has even picked up the bass again. The Batson Trio is playing for a wedding in late June in Crested Butte, which may be G's last taste of relative freedom for a long while.

Bone Marrow Transplant schedule is being firmed up. Barring complications, we will go to Denver on July 1st for a week of testing. He'll likely have the following week off, and then begin radiation on the 16th of July. Sean's marrow will be harvested that week. Galen will be admitted to BMT on the 19th for high-dose chemo, and then Sean's marrow will be given around the 24th or 25th of July. THESES DATES ARE SUBJECT TO CHANGE, so think of them as preliminary until we know more. It seems like most anything can happen...

So, remember Music from the Heart, and please also remember the hospitals full of suffering kids in your prayers. Feel free to distribute Galen's web site address.

Deb

Saturday, May 25, 2002 at 06:44 PM (CDT)

Steamboat Springs - Spent today packing boxes and moving to the new place. Thank you: Bowers, Barneys, Gallaghers, Dettwilers, Heaths, Patricia, Kelsey, Lizzy and Galen!

Galen slept off his headaches and fevers from yesterday, and feels great today. In fact, he's been talking nonstop since morning, and is excited about the move.

He's having dinner with Kelsey and Deb, and then going to the movies with Jay and Eric!

Someone on the Hem/Onc/BMT floor at Children's told me that every good day is a day that's not a bad day. Yup. Today's a good day, and I'm grateful for each and every one that Galen gets.

Thanks for your thoughts and prayers for Galen and for all the kids battling childhood cancer.

Deb

Friday, May 24, 2002 at 07:39 PM (CDT)

Steamboat Springs - Kelsey arrived home from Goblin Valley today, Sean has a soccer tournament this weekend in Denver, and Galen has had a fabulous week! No nausea, no headaches, played golf with Ralph and Sheryl yesterday, and was generally his happy self.

We're in the process of moving to another house (Thank you Ron and Karen), and everyone who's here is madly throwing things into boxes and David's hauling loads of stuff to the house.

Thanks to John and Teresa who got us moving last weekend, and to Cyndi, Josh, Brad and Dustin for muscle and trucks! Thanks Lynne and Paige for packing up the kitchen - you've saved us hours of work. Amanda - I don't know how we'd have done any of this without you. You're wonderful.

It's dangerous to thank folks by name, I think, because I know that so many people are out there praying and cooking and helping out (Judy Ross and all of you 5th graders and your families) and that I'll only ever know a fraction of what the community has done for our family. We are truly grateful to have had a somewhat normal week, and we are extremely grateful for our family of friends here.

Jay came to clinic with Galen this past Monday. It was a long day, but the boys enjoyed each other's company. We had a nice dinner out - but I never knew that two 9-year-olds could take so long to choose meals at a restaurant. I'm learning from them that life doesn't have to be lived in a rush from one thing to the next. Thanks, guys.

As I write this, Galen is in bed with headaches and fever, the first since last Friday. Hopefully he'll sleep it off, and be able to enjoy tomorrow. No clinic until Wednesday this week, when we start the drug-month over again.

More later,
Deb

Friday, May 17, 2002 at home, mostly

Steamboat Springs - What a tough two weeks for a tough little guy. Galen has been suffering horrible headaches, nausea and fevers for the last two weeks. He's had line cultures, antibiotics, lots of ibuprofen, all in addition to his normal chemo and supportive meds. His little body just doesn't know which way is up.

We've spent time in the ER and in the doctor's office here in Steamboat, most recently all afternoon today. Galen's finally sleeping.

I'm not sure I remember what Kelsey and Sean look like, but I'm sure I've had dinner with them this week, and I'm sure I've driven them to various activities this week... hang in there, you two. Thanks for all that you do for Galen. One day I looked up at you two big kids and you'd grown, I swear it. I'm sorry to have to miss some of it...

Deb (Mom)

Sunday, May 7, 2002 at home

Steamboat Springs - After an uneventful weekend at home, we drove to Children's again on Tuesday. Sean came with us to clinic this time, and we brought the Playstation (thank you, RT!) to pass some time. Galen started consolidation therapy with a new combination of drugs. One requires hours and hours of fluids to prevent bladder damage, another requires injections into the Broviac at home, and the other is a tablet taken in the evening before bed. It's a new routine to get used to.

Galen's spirits are reasonably good, considering. He's been quite sick this week, with nauseau, headaches and fevers. We've been to the Dr's office locally, and to Yampa Valley Medical Center for a blood draw. It was a difficult visit to YVMC, because G was just plain sick. I've done the rest of the blood draws myself and hand-delivered them to the lab, so Galen can be sick in his own living room instead of in a hospital infusion room.

Anyway, his hemoglobin dropped a bunch by Friday, which probably accounts for the headaches, and we raced to Denver for a transfusion of Packed Red Blood Cells. We arrived Friday evening for the transfusion, which lasted until 2:30AM, slept at St. Christopher's House until 7:00AM when we had to return to Children's ED for a followup, then headed back to Steamboat for Galen to play in the Youth Orchestra spring concert.

Before Galen was given his transfusion, his fever spiked a bit, and they cultured his Broviac lines and administered a prophylactic dose of antibiotic in case anything came up in the line culture. Fevers generally signal infection, and infection in a neutropenic kid (low blood counts) signals an emergency, so cultures and antibiotics are fairly frequent occurrences.

On the way from Denver to the concert, we stopped in to the doctor's office in Steamboat to get the 2nd dose of antibiotic, and JUST made it home in time to change into black and whites and collect the cello and music.

After the concert, which was fabulous, of course (yea, Teresa), Galen played outside the Pavillion at Perry Mansfield with the kids. Imagine my joy at seeing my cancer kid out playing! This has been a rare sight since Christmas.

Thanks to everyone for all of your support - I mean it, we couldn't do it without you. Thanks.
Deb

Friday, April 26, 2002 at home

Steamboat Springs - We're back home after an eventful week at Children's. Saturday, Galen's tummy troubles peaked with severe pain and constipation. Ed, Jay and Eric had decided to drive down to see Galen on Saturday, but by the time they arrived in the morning, he was in so much pain that his docs had agreed to a morphine dose to get him over it. Jay and Eric arrived just as the morphine began to kick in, and between the drugs and Jay's insistence on walking the corridors, Galen's belly improved immensely. He spent the next few days on the potty, but it was time well spent, if you get my drift. Thank you, Ed, Jay and Eric. You guys are the best.

Midweek, Galen had surgery to place a Broviac, which is a central line used to administer medicine and blood products during Bone Marrow Transplant. I hate hate hate seeing a tube sticking out of my child's chest, but I know that it'll help him down the road to have that line in place. I've learned how to maintain his line at home, and Galen's learned a bit about hydraulics using all of the bits and pieces of line care (thanks, Jon!) and I guess learning is learning, after all.

Galen's counts finally crashed, and then began to recover, so we got to go home later in the week. It took four wagonloads and a fifth with Galen and his cello to get everything out of that room and into the truck. 2+ weeks in the hospital...

Friday, April 19, 2002 Children's Hospital

Children's - It's taking some time for G's counts to drop out. We're passing the time, somehow. Sean came down for a few days of schoolwork and Playstation, then headed home for a soccer practice later in the week. Thanks, Nancy and Katie for running him back to Steamboat.

We expect to get to go home sometime next week, maybe Wednesday or so. Meanwhile, the steroid monster makes Galen get up and trot down to the kitchen area at 4:30 AM to make a snack. He is learning to take yucky medicine by hiding it in pudding and chocolate milk. His belly is swelling mightily and making him quite uncomfortable during the night. Imagine sleeping when you're 8 months pregnant and you'll have an idea of how he feels. His cheeks are round and full, and quite a contrast to his thinness at the end of March.

Galen's hospital room is decorated with all of the cards and letters from LWPS! It's so festive in here! Thanks for the beanie baby instant collection - they stare down from all over the room. Nancy hung the snakes by their long tails from various points in the ceiling, and they sometimes startle the evening nurses. That's fun.

Thanks, Michelle, Jake and Nicole for coming by to visit. Thanks too for the tofu and kale - a most welcome treat after days of hospital food.

Later,
Deb

Friday, April 12, 2002 Children's Hospital Denver

Children's - Saturday was a pretty good day. G played out side, walked a bit, played with Sean, and had dinner with good friend Stacee at the Cantina. Mary Ellen came to visit this weekend, also.

On Tuesday we headed to Denver. Since Galen's Ph+ diagnosis, he has been bumped to the Augmented version of the Standard Risk protocol for ALL. That means that on Tuesday during clinic he was started on a two-day infusion of a chemo agent that is known to lower a person's blood counts. When blood counts are low (neutropenic) you are much more susceptible to infection, and so we are staying at Children's until Galen's counts crater and then begin to recover. W're in a different room this time, and meeting a few different people. Our favorite nurses and some new faces are helping us to pass the time. Ralph lent Galen his Playstation, and we have cello and schoolwork to attend to.

The staff here is quite curious about a kid who does schoolwork and plays cello, and he's had a couple of command performances! His cello playing has become more expressive, somehow, since he's been ill. Perhaps this is a good way to relieve frustration and anger and sadness. I'm bringing my viola down to Denver, then, this summer.

More later,
Deb

Friday, April 5, 2002 Still at home

Steamboat Springs - Please say a quick prayer for Bill Burkhart and his families. Thanks.

We had a quick visit to the Emergency Room at Yampa Valley Medical Center on Saturday night. Galen's blood sugar spiked and we had to go get it checked out. Missed the orchestra concert on Saturday evening. We did get to go on Sunday, and G was able to enjoy half of it before he had to go home.

Monday was clinic day. We got up early and drove to Denver for an 8:30 AM appointment. Galen has to be NPO (nothing by mouth) for six hours before his appointment on clinic days until his spinal tap is completed and he comes out of sedation. It's a long long day, and given Galen's general carsickness, sometimes a messy one. The spinal gave him a headache, and he's still weak and unwell, but he slogged through it.

The rest of the week he was tired and headachy, and becoming bloated from the steroids. His sugars are still restricted, which was troublesome on Kelsey's birthday this week. We put a slice of cake in the freezer for him for some future date when he'll have no dietary restrictions. He naps alot.

Galen's sad about missing summer in Steamboat, especially the special celebration that he and best friend Jay had planned for their July birthdays. He's sad about missing soccer and baseball seasons, and about not getting to swim at Health and Rec. It's hard to plan alternatives for this summer when we really don't know how he'll feel during Bone Marrow Transplant. Working on it, though. Anybody know how to make a wooden instrument (cello) really really bug-free??

Thanks to everyone for their thoughts and prayers, for phone calls and meals. Invaluable.

Hanging in there, mostly,
Deb

Friday, March 29, 2002 - home to Steamboat

Steamboat Springs - The last week went by somehow. Galen's diagnosis changed yesterday to Philadelphia chromosome positive ALL. This is a much harder form of leukemia to cure. He will need to have a bone marrow transplant sometime this summer. We don't know much yet, but you can bet I'll be up to my elbows in research before the weekend is up. I'm not sure exactly how much I want to know yet, but at least the science is interesting.

Some of these last days went by quickly, like the one when the San Jose Cyberrays and the Rapids visited Galen's bedside, and the one when Mia Hamm and Brandi Chastain came to chat over Galen's big black stuffed doggy, and the ones when Kelsey and Sean and Dad were in Denver. Other days went by very slowly, like the one when we thought Galen would be discharged but his blood sugar started to climb and they held him another day.

Thanks to all of the visitors who came all the way down here, and for all of the phone calls (and phone cards!!), thoughts, prayers and tears. We'll have many more of all of these in the next few months. Thanks for all the meals delivered to David, Kelsey and Sean in Steamboat.

Galen's tired, weak and a little stunned by all of this, but glad to be home. We have to be back in clinic at Children's on Monday, but at least we'll have the weekend to settle in at home a bit.

Deb

Tuesday, May 21, 2002 at 06:31 PM (CDT)

Steamboat Springs - Thanks for visiting Galen's web page. It's brand new today, and I'm trying to catch up the journal, so check back over the weekend to read the gory details. There's one entry in the History section so far.

Deb

Saturday, March 23, 2002

Drove to Denver last night. Galen was refered to Children's Hospital Emergency Department because he's been ill for a couple of months. He's been having fevers, headaches, and fatigue, and in the last few days he's been on crutches because his right ankle won't bear weight. Our friend Cheri described him as "flat" and "not himself". He's had lots of blood draws and doctor visits, but something just wasn't right.

In the ED, after a long wait, and several visits from nurses, another blood sample was drawn. By this time it was near midnight and in very short order the ER doctor came back and sat on the counter.

"Sit down, Mom," he said, and then he addressed himself to Galen.

"We've cancelled the rest of your tests, Galen. We know what's wrong with you. You have leukemia."

There was a pause, and Galen said, "Oh great. I have cancer in my blood."

The doc discussed leukemia with Galen, and another nurse came in and visited. He brought a Payton Manning beanie baby and joked around with us a little.

Dr Angela Trobaugh arrived shortly. She's an oncology fellow at TCH, and she started by making a sort of pac-man out of her hand and explaining that there are "little cells in your blood that eat up infection..." but she didn't get very far. Galen looked at her like she was nuts and said, "Those are your white blood cells," shaking his head at her as if wondering how she got her MD. Luckily Dr Trobaugh has a sense of humor.

Galen has been admitted to Room 555, on 5A, the Hematology/Oncology/BMT floor of The Children's Hospital at Denver. That was a difficult door to walk through.

By this afternoon, Galen has had surgery to place a mediport, and he's had a spinal tap and bone marrow aspiration to assess the extent of his illness. He's also begun chemotherapy. Now we wait for genetic testing of his leukemia cells, and get used to hospital routines.

Deb

Click here to go back to the main page.

----End of History----