about CaringBridge  |  home page  |  view guestbook  |  view photos  |  journal history  |  donate to CaringBridge

Click here to go back to the main page.

Wednesday, December 23, 2009 11:48 AM CST

Well if I had a nickel for every time I said I was going to update Spencer’s site since our visit to Duke back at the end of July I’d…well, I’d have a couple bucks by now for sure. So, busy days needless to say. But just busy with normal life, nothing extreme. So it’s finally time for an update, but first, Merry Christmas to everyone and a great New Year.

So most importantly, we did get back to Duke for Spencer’s 5 year post-transplant checkup way back on July 28th. Everything went great (except for getting the bills) and Spencer’s new name after that was Bob Normal. Can’t do better than that. But it’s strange because although we’ve been through so much of what has to be considered a very negative and unlucky experience, there are times we almost feel guilty about how well Spencer is doing. Our trip to Duke was one of those times.

We were very happy to be able to hook up with the parents of Spencer’s transplant buddy, Jared LaCombe. If you’ve been following Spencer for some time you may recall that we met Jared, Lynn and Don during Spencer’s workup to transplant. We were on the exact same schedule and Jared and Spencer had their transplants on the same day within five minutes of each other. We became good friends and even got to visit them in Florida a few years ago. Unfortunately the reason we were able to see them this time was that Jared had been inpatient at Duke since May with serious complications. While we were there Jared ended up in the ICU and very sadly earned his angel wings after the fight of all fights.

We have been through hell when compared to your average happy healthy family, but we’ve been through nothing compared to what Jared, Lynn, and Don have endured for the past 5, 6, 7 years. Words utterly fail to tell the story, and even your own thoughts cannot grasp the meaning of all this. And unfortunately, Jared’s story is not unique in the transplant world. It sucks you in for life regardless of the outcome. Obviously the healing is going to be forever for Lynn and Don and we are thinking of them always, and Jared, and many other transplant families.

And after that downer, I have to get back to Spencer, which, in a nutshell, has been the cycle of life since September of 2003. Spencer is now in 3rd grade and has really come out of his shell in school this year. He now seems to be comfortable with who he is as a person, and within his relationships with his friends. This has allowed him to blossom. It’s been very fun to see. And in the, “expect the unexpected” department, Spencer has become a phenomenal reader. I’m not sure how it happened but at the beginning of the summer he started to read the Magic Treehouse series of books that feature Jack and Annie and some magical stuff. They are pretty easy reading and about 80 pages each. Someone I think laid down a challenge for Spencer to read the first Harry Potter book, which was way over his level at the time. Well he took that book to Duke, showing off to Dr. K that he was reading it. Now it’s almost Christmas and he is on the 4th book..........wait for it.......after reading the entire 7 book series and starting over. So he has read 11 Harry Potter books in less than 6 months. He promises to move on to something else after the second time around, but he is into it, even dressing up as Draco Malfoy at Halloween. You cannot stump Spencer when you quiz him about ANYTHING in the Harry Potter series. This reading has done wonders for all his class subjects. Actually, we were out to dinner the other night and Spencer was reading his book with a flashlight. At the end of dinner a lady jumped up and intercepted Spencer as he was leaving, explaining to him how impresses she was. She was a professor of French Literature at UCLA and invited Spencer to go to college and join her class. Spencer was beaming.

So all in all, during the summer Spencer went to Camp Ocean Pines for a week, took two Baja trips, spent a week in Lake Tahoe, attended a week Surf Camp in Morro Bay, and took an amazing trip to Santa Rosa Island in October. You can see a slideshow of that trip at this link: SRI. Spencer is a Wolf Cub Scout this year, is doing 4H photography and will be playing basketball in January, his first try at a team sport. And speaking of photography, Spencer has shown quite a passion for it. He entered three photos in the annual New Times (our county’s local free paper) photo contest and won 3rd place and 1st place in the youth division, collecting $350 in cash and prizes (yes, cash). Trying not to let it go to his head, but obviously he was beaming about that too. At the moment it’s Christmas vacation and Spencer will spend some time skiing in Mammoth (which we just finished) and go on another Baja trip. So he’s making the most of it.
Thanks for checking in and we once again hope that everyone has a great New Year. I think a lot of people can use one.

Brian, Kerri, & Spencer

Tuesday, May 5, 2009

The further out we get the less time I have to update the site. Sorry about that, but at the same time, it is good news.

Big thing is Happy Re-Birthday to Spencer today. Today is his 5-year post-transplant anniversary. He is doing so great that we swell with pride when we think about it. We are so proud of him. He's an incredibly happy and sweet kid. He loves all the fun things in life and wants to play until the cows come home. Kind of makes it a challenge to get him to do the things he doesn't consider fun, of course, like homework and such. But still, he's great.

Speaking of school, he's just about finishing up with second grade. He's doing the California state testing this week for the first time. He's had a pretty good school year. He finished up what was probably his last year on the Mammoth Mountain ski team. He did a few races and overall had a good time. His skiing has improved so much we can't believe it. He's always been a good skier but hasn't been into the steep stuff much. But at the end of the year he was having no problem going down runs like Daves, Scotty's, Cornice, and Climax. If you know Mammoth at all, you know those are steep. Climax is double-black diamond. A bit scary as a parent watching Spencer go down that kind of stuff, but he was ready for more.

Recently Gramma Betty treated us to a trip to an Arizona dude ranch where Spencer had the time of his life. He played with kids all day, rode horses day, and basically just wants to move there.

Summer's almost here and Spencer's definitely ready for that. We've got to get back to North Carolina somehow for his 5 year checkup pretty soon. He'll be going to Lake Tahoe for sure, and to Baja again this summer. And he wants to go fishing pretty much every day. So it's going to be busy, even if we don't have the time and can't afford it. Should be fun.

Thanks for checking in.

Spencer & fam.

Saturday, October 18, 2008 2:47 AM CDT

No update since July. I guess that's pretty good. But sorry for being so boring. Actually, life has been anything but boring, what, with your typical 7 year-old wandering around. First off, Spencer has been doing great. We are living fully immersed in the world of normal healthy people, having emerged from the wardrobe quite a while ago. The only issues Spencer has, besides sensitive skin, is at this time of year he gets a lot of pretty bad bloody noses, usually at about 5 in the morning. This is due to his medical history, particularly the radiation messing up his sinuses, combined with the extremely dry Fall air. Spencer gets quite upset when he gets them, but he does a good job getting them under control.

Otherwise Spencer had a great end to his summer, highlighted by his first-ever trip to Baja California with dad (see photos). Now there's proof that Spencer has been doing well. It wasn't too long ago that even the thought of taking Spencer to Baja seemed ridiculous, particularly to some desolate spot 40 miles down a dirt road. But we did it and Spencer had the best time of his life. He cannot wait to go again next summer.

And now Spencer has been enjoying 2nd grade, playing with all his friends and doing fairly well in school, despite having quite a distaste for homework. Must be pre-programmed in their brains. He's quite good at reading, okay at math, and struggles a bit with his writing, no doubt due to treatment messing with his fine-motor skills...and being a boy. But he gets through it and continues to improve at everything he does. He is a very happy kid and can light up a room with his presence.

Spencer is looking forward to another ski season, which is just around the corner, but not before his birthday and Christmas, neither of which can come soon enough for him. I try to tell him not to be in such a hurry, but he doesn't listen. Must be pre-programmed in their brains.

Thanks so much for checking in and hope everyone has a great Holiday Season.

And go Jimmie!

The Caserios

Tuesday, July 1, 2008

(All new photos!)

Today was Spencer's 4 year studies/checkup with Dr. K in North Carolina. Yes, you read correctly...4 years. All the labs and tests and studies and Dr. K visit were all done on one day and Kerri and Spencer even got out of there by 2PM. Definite world record. Kind of a long way to go for a one day appointment, but we hope to do the same every year from now on.

Spencer was given a completely clean bill of health. No issues whatsoever. In any tests that gave instant feedback he is normal to above normal in all of them. Don't know what else to say besides Spencer is a rock star. Keep it up. We could not be happier.

Spencer and dad were scheduled to head to North Carolina last week but Mom couldn't pull it off that week. And since she missed last year she didn't want to miss this year, so she rescheduled the appointment for this week. And dad took the opportunity to stay home and get stuff done. (On our rescheduled week Spencer and Dad went to visit Gramma Marge and Grampa Fred in San Diego, where we visited the San Diego Zoo, the Birch Aquarium, the Midway Aircraft Carrier Naval Museum, the Del Mar fair, went boogie boarding, hung out in the pool, bla bla bla. A summertime jaunt. We had a great time.)

This week Kerri and Spencer got a fantastic Corporate Angel Network flight with Bank of America from Van Nuys direct to Charlotte. And when flying into Charlotte, we always get to drop in on our friend Alan White, who now lives on the 25th floor of a highrise building in downtown Charlotte. Apparently Mom and Spencer were quite the city-folk. They had a great time over the weekend, going out on the lake, eating at Red Rocks, and playing with Alan's dog Max.

Then they headed to Durham on Monday, and stopped in for the obligatory visit to Courtney at Hendrick Motorsports. Just a quick stop off to say "hi". Then they had the most fun of all at Concord Mills, which is one of those over-the-top shopping malls that seem to be all over North Carolina. Alan said it was the biggest tourist draw in North Carolina last year...a shopping mall. But inside the mall is a NASCAR Speedpark, and Mom and Spencer went to town. They have bunches of go-cart/Malibu Grand Prix style cars, but NASCAR of course, on different courses. They've got road courses, short tracks, superspeedways, you name it. And Spencer got to drive all by himself. Apparently they had a ball, staying entirely too long and not getting into Durham until after 10PM.

Now they have a day to burn, probably going to the Life & Science Museum, before heading home on the 3rd. Spencer absolutely will not miss 4th of July at home, or else! Unfortunately, because of the holiday week, Corporate Angel Network was not able to come up with a flight home. But we lucked into a couple cheap return tickets so hopefully that will all work out.

Thanks for checking in. And thanks to everyone for all their support, that has enabled Spencer to get to this point. Hope everyone has a great summer.

Wednesday, March 12, 2008 12:58 AM CDT

All new photos as well!

Yes, a bit of time went by between now and the last update. Medically speaking that is a good thing. But kind of busy with regular life, which is why no updates. Thought I'd better throw one up.

Speaking of medically, not much to speak about. Spencer is doing so fantastically well it's just unreal. He did get a fever for a few days back in January, which eventually required a trip to a doctor and a prescription for antibiotics. But other than that Spencer has not seen a doctor, taken medicine, or been near a hospital since our checkup at Duke last June. How's that? Talk about normal. Only bad thing that happened is that Spencer missed his endocrinology appointment and checkup at Stanford at the end of January because of a storm that closed the road. So far he has not had labs done or had a checkup since June. We're working on that one.

Spencer has just been going to school, going to Cub Scouts (which he really enjoys), and being a kid. He just finished with his Pinewood Derby car for Cub Scouts. His car won a couple of heats before being knocked out. He got the "best paintjob" award. All the Scouts had a great time with that and can't wait to do it again.

He is doing well in school. Definitely being challenged from time to time. Writing his hard for him, as is finding both motivation and expanding his attention span. But he's doing it, making huge progress. He is not out of the realm of "normal" for a 7 year old. But it's always hard to wonder which issues he's having may be related to treatment and which are not. We kind of need to keep the mentality that most issues are not treatment related and try to help him grow in a normal way. However, we need to pay close attention to make sure things are progressing normally. So far they are.

One of the interesting and challenging effects of treatment is how kids Spencer's age react to social interaction with kids their age after such a long period of not only isolation from peers, but also being spoiled with attention in an adult world. Granted it's not the type of attention that anyone wants, but if you think about it, through treatment, and especially transplant, you have to be so on it as far as every need. It's so all about them, from everyone - parents, grandparents, doctors, nurses, etc.. Now that Spencer is in a normal environment where there is normal social interaction, I think it's a bigger challenge. But he is doing well with it. We are now in the stage, far enough away from treatment, that many of the new kids and parents have no idea of Spencer's medical background and are quite shocked when they find out about it.

Otherwise, it's still winter and Spencer has been blossoming with his skiing. He is on the Mammoth Mountain Mighty Mites ski team, which is the 6, 7, and 8 year old's version of the race team. Normally they just cruise around the mountain like a pack of monsters skiing all over the place. But they do coach them and introduce them to advanced skiing and racing. The first weekend of March was the Mighty Mites World Championships, where the kids all break up into teams and do a slalom race. Spencer was on team Switzerland and did really well, considering it was his first time down a slalom course ever. Team Switzerland came in 4th place. All the kids got medals and Spencer has been proudly showing it to everyone he knows. We were up there all week, with great skiing and weather pretty much the whole time, and by the end of the week Spencer had turned over a new leaf with his skiing. He's always been a really really good skier, particularly technically. But now, after the race, he's found a new level of confidence and aggression, for lack of a better word. Now he's charging down the groomed black diamond runs pretty much as fast as a little kid can go, carving slalom turns all the way. I can't catch up to him going full-out. It's a little scary but the kid is ripping.

As if that wasn't enough, he's taken his jumping to a new level as well. The parents have some serious mixed feelings about that as you can imagine. But you can't stop a kid from wanting to get air. In the photo above Spencer's jumping the largest jump on the Forest Trail Park, and he would take off from the ramp on the far left of the photo, fly a good 15 feet through the air, about 3-4 feet off the ground, carry the whole flat section and land on the down ramp, and ski away. Holy cr*#, was our reaction at first. But he's got it down. Watching what the top guys do in the park on both their skis and snowboards at Mammoth is just incredible. And we really can't see that being such a safe thing for Spencer to do, but man does he like to jump. Skiing has been the thing that has done the most for Spencer's conditioning and confidence after transplant. We'll be up there again for Spring Break.

Speaking of skiing, Mom has taken her skiing to a new level as well, by becoming a ski instructor at Mammoth for the winter. After a rough start to the season she is really enjoying it and is currently busy preparing for her Level One PSIA exam. So Spencer and Dad do our thing at home and try to go up for visits as often as we can. That goes through April.

And that's it for now.

Hope everyone is doing well and thanks for checking in.

Caserio Family

Tuesday, November 20, 2007

Happy 7th Birthday Spencer!


Nov 2 Update:

As you may have gathered from the couple photos on this page (and new ones in the photo album), Spencer and family just returned from an exciting trip to Hawaii. The idea for this actually began as Spencer's Make-a-Wish trip, but it didn't end up that way. Mom and Dad spent quite a lot of time on Maui during the windsurfing competition and filming hey-days (for us at least) so going to Hawaii doesn't carry that much excitement anymore for us. However, The Big Island was another story. Two of Spencer's favorite things in the world are volcanoes and dolphins. And guess what? The Big Island has both in abundance. A week on the Big Island, doing both those activities, would be a great Make-a-Wish trip.

But upon further investigation, the Make-a-Wish trips to Hawaii are a fairly packaged deal and didn't fit in with our intentions. First, you could only swim with the captive bottlenose dolphins at Sea Life Park on Oahu, and stay in their choice of hotels. Second, you couldn't do two things...say swim with dolphins and see the volcano. It was one or the other. Furthermore, the dolphins on The Big Island are of the wild spinner variety and hang out in the open ocean, albeit very close to shore, in between 20 and 150 feet of water. For some reason, letting a Make-a-Wish kid swim around in 100 feet of water in the open ocean with wild sea creatures wasn't exactly on their agenda. And that was understandable. Long story short Spencer and family bailed on that option for a Make-a-Wish trip and tabled it for another time. We would go to Hawaii on our own, for Spencer.

And that was fine with us because we really want Spencer's Make-a-Wish trip to be for something that is normally out of reach, either financially or otherwise, like getting to meet Jimmie Johnson or Jeff Gordon during a race weekend or something like that (which Spencer doesn't seem interested in at this point). We're working on something else.

And since Gramma Marge and Grampa Fred have a timeshare near Kona it was a no-brainer. So on October 14th off we went to Hawaii - a couple days on Maui, a week on The Big Island, followed by four more days on Maui. We are able to escape the tourism of Maui because we have a lot of friends on the North Shore. We stayed with our world champion windsurfer buddies and California transplants Matt and Kevin Pritchard. And their parents Judy and Mike live there now as well and Spencer loved to hang out there with his new adopted gramma. So big thanks to Matt and Erin, Kevin and Lindsay, and Mike and Judy.

Spencer was in hog heaven the whole time, soaking up every new thing. We went on hikes in the rainforest, swung on ropes through waterfalls, picked guavas and passion fruit, cracked open and ate coconuts, snorkeled, boogie boarded, surfed, etc. etc. etc. Spencer was determined just to stay there the rest of his life.

Of course The Big Island was the highlight and the reason for our trip. We attempted to swim with dolphins by ourselves as we were armed with some local knowledge on how to do this. And I'm sure it would have been possible but because of where we were staying and the limited time we had to devote to any one thing that really didn't work out. But it did get Spencer very into snorkeling. After our first dive, which was spectacular, Spencer tromped out of the water and declared that it was, "better than on TV." I guess that's saying something. Best of all Spencer saw a turtle on our first dive, which is another of his favorite things. On our second day Spencer found a very cooperative little turtle, or honu, who let him swim with him (or her) in super shallow water for at least five minutes. Spencer was in a trance he was so excited.

There was to be more diving later but first we took a two day hiatus to the volcano. We had planned to do all the sights of the national park but we immediately happened upon a park ranger who was about to lead a four mile hike down into the Kiluea Iki crater and Spencer was keen to go along. This hike turned out to be one of the highlights as the ranger was not only full of information that we otherwise would never have gotten, but he was also a great animated storyteller. The hike was great and Spencer enjoyed every minute of it. And it was pretty tough at times and Spencer handled it like a champ.

The Kiluea eruption has been going on since the mid-eighties but at this time the only flowing lava is not within the park boundries. And the lava is no longer flowing into the ocean. This meant that a helicopter was the only way to see the eruption and Make-a-Wish or no we were not going to be denied. That's where we blew the budget out the window, but hey, better there than to the hospital. We had a great helicopter ride over the Pu'u O'o vent. The weather was fantastic, and as luck would have it, the flows had increased in the previous two days so we saw the best the volcano has offered for the previous couple months. Spencer kind of thought he might see a thousand foot fountain of lava like in all the travel photos, but that hasn't happened for 25 years. But he was stoked nonetheless. After the helicopter ride we went down to Punalu'u Beach, which is famous for turtles hauling out on the black sand. We were not disappointed. It's amazing to see Spencer smile when he gets to see stuff like that. There were three turtles hauled out and more in the water. Spencer was amped to go snorkeling but I was a bit worried as the ocean conditions were not stellar. It was a tad windy and there was a lot of surf, leaving only a narrow band near shore without whitewater, but still choppy at that. But he still wanted to go. Gramma Betty might have had a heart attack if she saw where Dad took him out. But that kid was a natural. He tackled it like a pro, even swimming way out near the surf. the marine life was a bit sparse due to the conditions and we didn't see any turtles in the water but what fish we did see were big, which Spencer loved. You could hear the "ooohh's" coming out of his snorkel all the time. We saw some big 30 or 40 pound jacks, or uluas, and giant parrot fish. Everything there was supersized. It was cool.

As if that wasn't enough we booked a trip on this guy's rubber boat to go check out the spinner dolphins the next day. That was very cool and Spencer showed off his snorkeling talents again. He'd just plop off the side of the boat in 60 to 100 feet of water, 200 yards offshore and just swim off in search of dolphins with nary a worry in the world. The visibility was over 100 feet and there were a lot of dolphins. They were indescribably cool. Spencer had hoped they would want to play with him but they pretty much kept their distance. They did seem to come closer to Spencer than to the grown-ups, which was cool. Perhaps because there were a lot of baby dolphins in the school too. But the dolphins were pretty much playing amongst themselves. Spencer was still wide-eyed. We even got to see a manta ray.

By this time Spencer was pretty pooped. We worked him over good and we still had four days left on Maui. We took it a little easier on Maui but still managed to get to the top of Haleakela and over to the great aquarium at Ma'alaea. And to top it all off Spencer made great strides with his math homework so he was productive even though he missed two weeks of school. In fact, he made more progress in Hawaii than he had in school. And we traveled all that way, did all those cool things, with not a hint of medical concern, other than sun screen, sun screen, and more sun screen. It was great. Again we just wish that that other world didn't exist and that somehow more and more kids will get through it like Spencer did. This trip was the culmination of all the efforts of so many people we couldn't possibly thank each and every one of them enough, from all the professionals like Spencer's first nurse (Shannon) and doctor, to Dr K. and Andrea, all the families we met going through this as well, to all the people on the outside trying to help like every runner or biker in every Team in Training event across the country, and world for that matter. Thanks to everyone.

And thanks for checking in.

Tuesday, September 25, 2007 12:40 AM CDT

A quick and long overdue update, plus all new photos.

Spencer is doing fantastic and had a great summer. Most of the time was spent at the beach, although we had a nice trip over Labor Day weekend up to Gramma Betty and Papa Verne's place up near Lake Tahoe. Spencer really likes going up there and he had a great time fishing, golfing, going to camp, swimming, eating, you name it. See photos of that in the album.

Then it was home for the first day of first grade. We feel very fortunate that Spencer's Montessori school that he went to last year expanded just this year to include first through third grade, thanks to the legwork of some of the parents. So now he still goes to the same school just ten houses down the road. It is a combo Montessori/Home/Charter school that is four days a week. It is very cool and it couldn't be a better situation for Spencer, and us. He does have his first inklings of a cold, missing most of the day yesterday. But he seems to be better today and is off at school.

One exciting thing on the radar is an impending trip to Hawaii to see the volcano. Spencer cannot wait for that and we'll certainly put some photos up when that happens. Otherwise we are so thankful that Spencer is able to be such a happy and normal (well, relatively) kid. We wish that everyone who has gone through what he did could be so fortunate. Maybe one day that will happen. Thanks very much for checking in.

Kerri, Brian, and Spencer

Friday, July 6, 2007

Back from North Carolina

Spencer and Dad had an action-packed 8 day long trip to North Carolina for our 15 minute visit with Dr. K. Upon landing in Statesville our bestest windsurf friend from Charlotte, Alan White, picked us up and we drove straight to his place on Lake Norman (which he actually doesn't live at anymore) and we headed out on the lake for some wakeboarding. Spencer took out Alan's kneeboard and did fantastic. It was the first time he got the courage up to hold onto the handle and get pulled around all by himself. He had a blast.

That was Friday. Saturday Alan took us to the Reed Gold Mine, which was the first place gold was discovered in the US. Spencer was quite excited to tour down through the mine. And then we panned for gold afterwards. Both Alan and Spencer found tiny flakes of gold. Dad and Alan's girlfriend Jen both came up bupkus. After that it was off to the lake for even more wake/kneeboarding. And did I mention it was hot hot humid hot? Perfect for late afternoon on the lake.

Sunday we headed to the North Carolina Raptor Center, where they have lots of...raptors. Spencer's favorite bird is the bald eagle and he got to see a couple fo those. Then we toured the backroads north of Charlotte, ending up in NASCAR country in Mooresville. Late that night we had an amazing lightning and thunderstorm show that lasted into the wee hours of the morning. Spencer wasn't too thrilled about that.

Monday we stopped by Hendrick Motorsports for a quick hello to Courtney, one of Spencer's best girlfriends. We had a quick tour of some more race cars and Spencer was quite befuddled why they had the # 48 tires on the #5 and #25 cars, or #24 tires on the #48 car, etc. etc. and so on. He ended up checking every car in the shop to see if any matched up. A little strange but whatever floats your boat, or race car in this case. Thanks Courtney. Then it was up to Duke for the start of Spencer's tests. He had a weigh-in, an echocardiagram, pulmonary function tests, and a chest x-ray. All went like clockwork. Then it was back to the hotel pool.

Tuesday was Spencer's first blood draw without the benefit of his mediport, which started out very badly but ended up just fine with a little nursing trickery. That was a big relief. Then we went to lunch before beginning our wait to see Dr. K. It wasn't too long and we fortunately didn't have too much to talk about. Spencer is doing fantastic, his tests were good, labs were great, skin is good, growth is good. We certainly talked about some big-picture issues but only briefly. Overall it was a pinch-yourself-he's-doing-great moment, but let's not talk about it for too long. Dr. K gave Spencer the okay to only go to Stanford for a checkup once a year and to Duke once a year...basically once every 6 months to the hospital. We're all, like...what? Okay, let's go home. It was good.

We also got to see Kameron and Matthew, who both jetted across the country from Stanford to have transplants at Duke. It was our first time actually meeting Matthew and his Dad, which was great, but that is where the reality of that place set in. Matthew has since relapsed (it was his second transplant and thus his third relapse) and the crushing weight of the reality of childhood cancer has once again set in. They are the greatest family, doing all the right things, fighting an epic fight, leaving no stone unturned, and, well, what the hell? Why? It's just a flippin' torturous forced drawn-out game of Russian roulette. The magnitude of what they are going through is just beyond imagination, and we see it from the same side of the fence. I can't even talk about it. Please send all your thoughts and prayers their way. Unbelievable.

We didn't have that information yet as we made our way home so things were still hunky-dory. The only flight we could get went from Louisville, Kentucky to Orange County courtesy of Taco Bell (aka YUM! Industries. Thanks YUM!). Spencer and I decided we would be adventurous and drive there, through Virginia, West Virginia, and on to Kentucky, about an 8 1/2 hour drive spread over two days. It was all through Appalacia so the drive was absolutely amazing, complete with a few nasty nasty thunderstorms. The flight didn't leave until Thursday afternoon so we hung out at the Durham Life and Science museum (aka: the Butterfly Museum) on Wednesday before driving part way to West Virginia. The museum had a bunch of new exhibits that were under construction during our last visits. The wolf and bear exhibits were finished along with a super cool outdoor exhibit all about the wind. Dad thought that was super cool, and so did Spencer. What wasn't cool was the weather. It was hot hot hot...and humid. Whoa was it hot.

That evening we spent the night in West Virginia, then we had an exciting ride through the thunderstorms on Thursday to the airport (fortunately there were no storms around the airport). Then we were off, with a somewhat unexpected extra stop in rainy Dallas (two months straight of rain for them). We landed so late we decided to spend the night and the next day with Spencer's 9 year-old cousing Trenton down in Laguna Beach, just a 15 minute drive from the airport. Dad got to show Spencer all his old haunts, the house he grew up in, the beach, everything. What Dad didn't get to show Spencer, however, was the beautiful open space that used to surround Laguna back in the day. What a flippin' nightmare the whole area has become. It's so bad that it was only the second time in over 15 years that I have been able to bring myself to go back. I did get to take Spencer snorkeling in what is now an aquatic desert. He had fun though. He saw some garibaldi, starfish, urchins, and a couple small calico bass. Yeah, he thought it was great. And it was a great beach day.

Friday night we drove home, and boy were we tired, as I'm sure you are after reading this long update. Thanks so much for checking in.

Sieze the day.

Friday, June 22, 2007

Spencer and Dad have landed in North Carolina for Spencer's 3 year checkup on Tuesday. Mom had to stay home this time because of dental appointments. It's a boy's trip this time, but Mom wishes she could be here. We flew in on none other than a Lowes corporate jet thanks again to Corporate Angel Network. Spencer made the most of it by showing off all his Jimmie Johnson fandom - shirts, cars, etc., and impressing them with his overall knowledge of NASCAR. They were all very impressed.

This weekend we are hanging out in Charlotte with our friend Alan White. We've already hit Lake Norman for some wakeboarding, and are going to pan for gold at some place Spencer's been talking about for months. We'll see how that goes. Then we'll head up to Duke on Monday morning.

Spencer is doing great and we are hoping for a great checkup.

Thanks for checking in and we'll post an update and more photos later.

Dad and Spencer

Saturday, May 5, 2007 6:25 PM CDT

365 x 3 = Day 1095

Happy 3 year re-birthday to Spencer.

Things are going well, so well that we almost forgot about his rebirthday. Happy rebirthday to our transplant friend Jared too. It took a call from him to remind us. I guess that's a good thing.

Friday, March 30, 2007

April 3 Update:

We were so smart to put Spencer's port removal off until after the cold and flu season. Well, I'm sure you can guess what I'm going to say next...Spencer has the flu. At this point we're just happy to know what is wrong with him as only two days after the surgery he spiked a high fever, which went down by the next morning, then by Monday night it spiked again to 103.6. Dr K said that would earn us a trip to the ER, not to mention a bit of freaking out. So without his port Spencer got poked for a blood draw and a shot of rocephin in the butt. THAT certainly didn't make him very happy. Fortunately everything was clear from the ER but still no answers. On his follow-up this morning with his pediatrician he tested positive for influenza B - the flu. So now he's got to fight it off. Hopefully it wont take too long. And we all did have flu shots this year. We're so smart.


Day 1059

Bookend Day!

Pretty quiet on the Spencer front except for a huge milestone today. Today we put a bookend on Spencer's treatment...he had is port-a-cath, or mediport removed at Stanford! Wish we could call it book-closed on this whole deal, but once a cancer/transplant kid - always a cancer/transplant kid. Ramifications from treatment will last a lifetime but Spencer symbolically ended a major chapter today with this surgery. This is the last huge milestone that was in our sights and with it Spencer has cast off and set sail on his own. No more hospital/fever/travel restrictions, no more easy blood draws or IV meds, no more infection worries. Done. Guess we should tell Dr. K.

Mom, Dad, and Gramma Betty all accompanied Spencer up to Stanford to get a small semblance of closure. There were a few deamons to fight off as we revisited the PACU, anesthesiologists (On the day when the newspaper article came out on the dangers of anesthesia for young children, no less. Guess we wont worry about that one at this point.), surgeons, and the recovery room. Spencer actually hadn't had surgery since the catheter was put in in September of 2004 but he handled it like a pro. Not a peep of complaint was heard. Not a tear was shed. It was all business for Spencer. And on a celebratory trip to the local toy store in downtown Palo Alto afterwards, Spencer restricted himself to a new basketball and a one-dollar Hot Wheels car. He certainly could have gotten away with more than that. But all in all it couldn't have gone better, although I'm thinking he won't be doing any ally-oop dunks for the next couple days.

He'll have the weekend to heal and hopefully he'll be back to school on Monday. There's just one more week until his Easter break. We may or may not go skiing that week. It will be his last chance for the year. We did have a fun ski week a couple weeks back. Spencer is charging down his familiar blue runs as fast or faster than Mom and Dad now. At this rate he'll be doing every run on the mountain without a problem next year. We were prepared to pay a lot more dues getting him up to all-mountain speed than that but he's really surprised us with his skiing prowess. We just shake our heads watching him carve a line down the hill. But snow's going to be melting fast now. Spencer wouldn't know it but it was a really bad snow year. Plenty of stuff to do coming up for the rest of the spring and summer.

And here's a shout to our fellow Stanford expatriots doing the transplant tango at Duke - Noah, Kameron, and Matthew. They are all over 100 days out now and doing well overall. We just wanted to lay out another breadcrumb for them with Spencer's port removal story so they can keep on healing and get back here. It's a long haul but it gets better. Then again, we think we saw a parent or two today in the pre-op waiting room that were likely experiencing the pain of a new diagnosis. It's a vicious cycle!

Thanks for checking in!

Mom, Dad, and Spencer

Thursday, February 15, 2007 3:12 AM CST

Day 1015

(All new photos.)

It was certainly our intention to have a nice update on day 1000, after all that is a nice big round number that should stick out. But we just let it roll by. Sorry about that but that's progress I guess, progress meaning that Spencer is doing so well.

We are in a nice steady mode of regular life. Spencer heads to school each morning, somewhat reluctantly, but then is very reluctant to leave at the end of the day. We often let him stay and play for after-care, which he really enjoys. Some kids were recently missing some school with a nasty cough which eventually required antibiotics for most. Spencer did start getting something but not too bad. The instant he complained that his ear hurt, and I mean the instant he said that, we headed to the Urgent Care place and got him some antibiotics for the beginnings of an ear infection. That seemed to knock it right down and he hasn't missed a day of school this year because of illness. We plan to keep that up. We do, however, plan for him to miss some school for skiing.

We did get to go to the mountains back in the middle of January, just after the super cold spell. There wasn't much snow, but what snow there was was epic. You had to say on a few main runs but that fit Spencer just fine. He did so fantastic that we were just beside ourselves. We put him in a couple lessons with Cathy Copeland at Disabled Sports Eastern Sierra just to start him off in his comfort zone. After all it was Cathy who did such a great job getting him started with skiing and really helping with his physical comeback from transplant. But by the third day we all decided it was time for him to graduate to regular ski lessons with all the other kids. We thought having some peers to ski with would have Spencer thriving. For better or for worse the mountain was so uncrowded that there was only one kid in his first lesson, and none in his second one. So much for that plan. But he had a great time anyway and really progressed beyond our wildest expectations.

And now for a bit of parental bragging. A very difficult part of having a cancer kid and a transplant kid is constantly hearing about how the treatment "could" potentially cause permanent problems on so many levels. This chemo causes heart damage, that chemo causes joint problems, the steroids weaken the bones, secondary cancers are a possibility, testicular radiation causes sterility, cranal radiation causes learning problems, thyroid gland this, adrenal gland that, etc., etc., and so on. As if trying to save your child wasn't enough you have to endure all that stuff for the rest of your child's life - he'll never play football, he'll have a tough time in school...whatever. Tell that to Lance Armstrong. So when some positive stuff is happening we take it. And skiing has been that positive for Spencer. His first regular lesson was with Mo, and she was so impressed with Spencer's skiing. But the next day, as luck would have it, his lesson was with her husband, Jon. This lesson was a private since no other kids signed up so Jon and Spencer just skied around as they pleased all day. Jon was so blown away that he couldn't stop gushing about Spencer to Mo all night long and into the next day. He said Spencer had the best technique of any 6 year-old he's ever taught. And he's been teaching skiing for...oh, just 26 years. Spencer may not be a daredevil tearing down the mountain at breakneck speed (thank goodness), and he may not have the stamina to go all day long, but he does seem to be a natural talent. He carves down the hill leaving big ol' dual trenches behind him, something not even mom or dad can do. And best of all, he gets excited about going. He's telling mom and dad to get a move on in the morning...most of the time anyway.

So there you have it. Find your strength, push that negative stuff aside and go with it. That said, it's snowed a bit more now so you know where Spencer will be heading soon, right after our next Stanford appointment, at which time we'll be scheduling his mediport removal.

Please keep Noah, Matthew, and Kameron in your thoughts as they are in the thick of post-transplant recovery at Duke after transfering from Stanford. Sound familiar?

Thanks for checking in and hope everyone had a happy Valentine's Day. And go Jimmie. NASCAR season is upon us.

Mom, Dad, and Spencer

Thursday, January 11, 2007 2:17 AM CST

Day 980

Hope everyone had an enjoyable holiday week or two. Spencer and family stuck around the homestead the whole time and had a nice uneventful time. Uneventful except for all the presents that Spencer got. It wasn't too out of control, fortunately. One thing that we have cut Spencer off of is large plastic toys of any sort. That helps keep the clutter down a bit because there is absolutely no way to put stuff like that away. So he got some puzzles, games, books, smaller toys, DVDs, etc. instead. He was definitely a nice boy for the most part so Santa stopped by.

Everything is going very well on the medical front. His last checkup at Stanford went swimingly, with all systems operating within normal parameters. Even his cortizol level (the body's natural steroid) came back normal. This means he doesn't even need a stress dose of cortef if he spikes a fever. Also, his growth hormone levels have all come back up to normal. And, not conicidentally, his growth has accelerated finally. Next issue is going to be the real kicker: mediport removal. We think we'll try to get this done perhaps in early April after the flu season. That's going to be a biggie.

Now Spencer is back in school. He had a couple play dates over the holidays with his friend Emily but otherwise didn't get too much kid playtime. He's happy to be back in school and he often refuses to leave in the afternoon. This can actually get a little bit ugly. But he gets over it quickly after we drag him out of there with his fingernails grinding into the dirt on the way out.

Besides school we are really looking forward to going back up to the snow as soon as possible. Unfortunately California is getting shut down on the snow big-time. We were going to go soon but now it's a possible record-breaking cold snap coming up. Single digit temperatures, 50 mph winds, and skiing over rocks doesn't sound too appealing so we're going to wait it out. Spencer has some new skis and is very excited. Plus he really needs the exercise. Until then, thanks for checking in and stay warm.

B, K, & SR

Sunday, December 17, 2006 0:51 AM CST

Day 955

Pre-Christmas update, at long last. Hard to believe Spencer is getting near 1000 days post-transplant. Really just can't believe it. Back during transplant it seemed like every day took a week, and every week took a month to go by as you anxiously checked off the days trying to get from milestone to milestone. Looking forward was the only way to keep your mind from breaking down. And now here we are, getting ready for Christmas just like a normal family.

Maybe a little overly normal. Each year we put up the LGB G scale toy train and make it go around in circles. Kind of our holiday tradition since Spencer was 1. But this year Mom and Spencer have taken it to a new level, buying several of those little Christmas scene lighted houses, general store, fire station thingys and making a whole little town scene as the train circles around the town and even under the tree. Spencer is quite enamoured with the whole thing, sometimes just laying there for half an hour just looking up at the tree, playing with the train, and probably just daydreaming about Christmas. He's pretty excited to say the least. It is most definitely his favorite time of the year. And he's all about talking it up how Christmas is all about love and being with your family...but methinks he's pretty anxious to open a present or two as well. Seems the whole family is embracing this Christmas as a truly normal and healthy one, and pinching ourselves to make sure it's real.

Here's how normal it has been since we got back from Spencer's checkup in North Carolina a month and a half ago. Spencer has been off all meds, save for his twice daily magnesium supplement. And now he's even off of that. So in the morning before school, Spencer only has to take his flinstone vitamin and brush his teeth (and dab a bit of suncreen on). Then at night he only has to brush his teeth and put his jammies on. We go to bed certain that we've forgotten to give him something. It's just so strange not to have to cram some sort of drug down your child's throat all the time. And his skin has been perfect, not requiring any creams for a while now. So this is what it's supposed to be like. We could get used to this. Not only that, but Spencer has not seen hide nor hair of a doctor in nearly two months. We haven't even had a blood draw. We did flush his mediport once but that's it. We are down to a Stanford appointment once every two months, which is coming up next Wednesday and Thursday before Christmas. He'll also have a follow-up endocrinology appointment. Unfortunately that will make him miss the last couple days of school for the year, when they are doing a little Christmas show and all. So, I guess if we were truly totally normal we still wouldn't be missing big moments like that, but many of those are taken away from you. Small trade-off I suppose.

The only fly in the ointment has been Spencer's repeated bloody noses. Drugs and radiation have taken it's toll on his nasal passages and, as one ENT said, "He's a bloody nose waiting to happen." He goes through phases of getting several a day, some pretty bad, and then a week or more without one. They happen randomly without warning so you have to be on your toes. One day everything was totally normal, then Spencer went into the classic pre-sneeze drill...ah..ahhh...aaahhh...ACHOOO, and splatted a nice even spray of pure blood everywhere, on the carpet, on the windowseat cushion, on Dad, on himself, on the game we were playing. Nice. No big deal for us though. We keep the paper towels fully stocked and a big bottle of instant carpet spot remover handy at all times. Just shake it off and start the game over.

Best of all, while Spencer has had a few minor colds, he's weathered them well and seems to be able to actually not come down with some stuff finally. Just over a week ago several of his classmates were dropping like flies, getting fevers and throwing up. It was apparently some 48 hour stomach virus going around and the kids were missing several days of school with it. Sure enough, one evening Spencer said he didn't feel well and thought we was going to puke. We're all, "here we go. Get the hospital's number handy." He hung out in the bathroom for an hour with Dad, but didn't throw up. He went to sleep. Made it through the night. Had diahrrea in the morning. We kept him out of school that day. He felt well enough to want to go hit golf balls that afternoon, where he promptly threw up all over the sidewalk...and then he was fine from then on...no fever, no more throwing up, no lack of energy. He just kicked it. He had it, and kicked it even better than the other kids. You want to talk about proud parents. And we can't end the update without giving a shout out to Spencer for being such a good kid lately. Maybe his brain completed some much needed connections or something but he has been such a sweet, caring, helpful and happy kid lately it's just a joy. He's in contol of his emotions and even when he gets upset he's able to stop, slow down, and get over it all on his own. We have the model child we always dreamed of having. And I am currently knocking on the wood desk, possibly sorry I even mentioned anything.

So that's pretty much it. But as we go into Christmas we are thinking of several families that are going through transplant right now and want to wish them the best. In fact, there are three kids going through transplant right now at Duke that are originally Stanford patients. (And our name is mud with Stanford as we certainly accept some tiny bit of responsibility for this unintended turn of events.) Kameron is doing great, having recently been released from unit 5200. Noah is doing well and nearing his discharge day. And Matthew is day 10 or so and is waiting for engraftment. Each of them will be doing the slow checking off of the days. All would appreciate prayers from everyone. Another kid, Joshua, is outpatient at Duke with some confusing issues. Please send him some positive thoughts. And everyone has been devastated by baby Donovan's recent relapse, his fourth relapse. All these kids are under the best care the world is capable of giving. Hopefully they can spend a few moments this month to have a Merry Christmas. Same for everyone.

Kerri, Brian, & Spencer

November 20, 2006

Happy 6th Birthday Spencer Rocket! Update soon.



Update: November 7, 2006 - 10:33 AM EST, Dateline: Jupiter, Florida.
Spencer just took his last dose of cyclosporine. He is now officially off all meds. He did so overlooking the tropical waters of Jupiter Beach, Florida as we await our flight home on Wednesday.

Day 901 - Dr K. Day Update:

We had an A-plus Dr. K appointment today - double thumbs up. Not only that, but it was a pretty easy schedule too. We got there late, Spencer did a pro access job before his blood draw, then we even left for a couple hours to go eat. When we got back it was only maybe an hour before we got to see Dr. K. She was very pleased with Spencer's skin and gave the okay to wean nearly everything. We can stop the acyclovir and fluconizole right away, which are both drugs that protect him from getting certain types of infections. And we will continue his immune suppressant drug, cyclosporine for only another two weeks and then stop. That only leaves his magnesium supplement, which we will stop 5 days before his next lab draw. If his level is good we will be off that too. In theory, spencer will be drug-free in two weeks, and off his last supplement in less than a month. Doesn't seem real.

Besides that, Spencer gets to have a flu shot this season, and can start his immunization shots again in about 3 months. He is down to doing labs once every two months, and no more IVIG appointments at Stanford. And, finally, he will be able to get his mediport out in 3-4 months, even before we head back to Duke next May. That is the last thing. We still have to hope any skin GVHD doesn't flare up, and he's still on travel and hospitalization restrictions if he gets a fever as long as his mediport is still in, but the news couldn't have been much better.

We've always gone into a Dr. K appointment hoping that we can wean this or that, or get some timeline shortened for whatever issue, but we always leave somewhat disappointed that it didn't happen. This time we went into it in total cruise mode, not really expecting anything, or even that concerned about weaning meds. It just wasn't that big a deal this time and would be happy with whatever. And what do you know?, we got to pretty much get him off all meds. Pleasant surprises this time. Cool deal.

It's just so amazing to be at this point. If you really stop and think how much medicines these transplant kids take, and how many different treatments and procedures they go through for so long it just boggles the mind. It truely seems like it never ends, and sometimes complications dictate that it never will. We are so fortunate that Spencer has done so well and has been able to get to this point. Returning to Duke always reaquaints you with other new and old transplant patients that are all hoping for the same thing. Spencer's message today is to keep the faith...you can get there...and now I'm going to Disneyworld!

Kerri, Brian, and Spencer


Day 900...or thereabouts.

Couple new photos in the album.

We are once again in North Carolina, this time for Spencer's 2 1/2 year checkup. The 2 1/2 year checkup isn't really on the schedule as in theory you go to yearly checkups after 1 year out. But that doesn't really happen. Perhaps, if Spencer continue's to do really well, we'll go to a yearly schedule after his 3 year checkup next May. This checkup is really just a visual skin check by Dr. K so she can confidently allow, or disallow, Spencer's final wean off of cyclosporine. There are no other tests scheduled at this point. The appointment is Tuesday.

We hitched another amazing ride out to the East Coast thanks to Corporate Angel Network. It's impossible to describe just what an amazing and valuable service they offer to cancer patients. We can't thank them enough. This time we were able to fly direct from Orange County Airport to Charlotte thanks to Wachovia. Wachovia recently aquired some banks on the West Coast and are currently flying across the country much more often. They are very proud to be involved with Corporate Angel Network and will likely help a lot more patients get to their appointments as they expand their flights. It's kind of pitiful to get off the plane and just say "thanks" after something like that, but what else can you do? This is the definition of "Can't thank you enough". So, thanks Wachovia. Check out Spencer with his ride in the photo album.

So we got to Charlotte late on Friday night and our appointment isn't until Tuesday. What is one to do? And what are the odds of getting a flight into Charlotte? What is there to do in Charlotte? Oh yeah, our bestest windsurf friend Alan White is from Charlotte. And what about Courtney with Hendrick Marrow? Obviously we have to see them both. Hmmm...and what else? I wonder where the NASCAR race is this weekend? Oh, it's just 2 hours up the road in Martinsville, Virginia. Anyone for a trip to see the fall colors in Virginia? Yes, our California friends don't understand us anymore. When we found out we were flying into Charlotte this weekend Kerri got on Ebay and checked out the Martinsville ticket situation. To our amazement, great tickets were going for face value. We were a little nervous but we went for it. We found a guy selling 3 tickets high up in the grandstands on the top row by the start/finish line. This was perfect, as no one was sitting behind us so Spencer could stand up, jump up and down, and do all the wiggling he wanted to without bothering anyone (except his parents, which he did quite often).

Well, the weekend was a whirlwind but it turned out amazing. We met Alan White and headed to the Discovery Place in downtown Charlotte, where Spencer had a great time. We even took in an Imax movie. Then we headed out to dinner at Kerri's favorite restaurant with Courtney and her husband Caleb, which explains that picture up there. Obviously not having a good time or anything. We felt a bit bad as dinner was super fun and took a while, but Caleb had to get up at 4 AM to go to Martinsville for the race. He is Jeff Gordon's gas man on the pit crew. It's a family affair at Hendrick Motorsports through and through. We had a great time, so a big thanks to Courtney and Caleb for spending their valuable time with us.

Then we headed up to Martinsville on Sunday morning also, although not at 4 in the morning. the Fall colors were stunning. It was raining in Charlotte when we left but it lightened up as we neared Martinsville. We blazed up there in just 2 hours and got about 3 miles from the track and traffic just stopped. It took another 2 hours to go the final 3 miles. It had been a beautiful drive up until that point but things weren't looking so good for a while there. We did finally get into the track, the weather cleared, and we proceeded to have an amazing time. The race was great, a few too many little cautions, but our first time at a short track was more than worth the effort. Perhaps we would have had a different perspective had...OUR MAN JIMMIE JOHNSON NOT WON THE RACE! But he did!!!!!! Not only that but he dominated for most of the race as well, so Spencer got to see Jimmie leading the way around the track a lot. That really helped the 5 year-old at the track situation. If you look at the picture of Spencer at the track above, if you look closely you'll see all the people crowding around the 48 car down in Victory Lane. Nice! We were quite nervous about taking Spencer. This was the first time he'd be at a race sitting outside in the grandstands with all the Dale Jr. fans. Well he handled the noise no problem and everyone was super nice, even though we were sitting next to a couple hardcore Jr fans. They didn't leave too happy. At least they weren't drinking and smoking. So Spencer has been to two Cup races and Jimmie has won both of them. I think they ought to pay Spencer to go to all the races as he seems to be a good luck charm.

And now we're in Durham with a day to burn before out Dr. K appointment. Will update about that. Thanks for checking in.

Kerri, Brian, and Spencer

go 48

Monday, September 11, 2006 3:13 AM CDT

Day 858

Update time, and new photos all around.

Spencer and family had a fun last bit of summer. Mom and Spencer headed up to Gramma Betty and Papa Verne's house near Lake Tahoe for some fun and Dad joined them a few days later. There was swimming, fishing, rafting, boating, and golf to be had. And the main attraction, that sunny warm weather. Actually, hitting and finding golf balls became quite possibly the main attraction. Spencer has already been into the game for over a year, but now it would seem that Mom is getting into the action. She hit quite a few balls on the driving range and by the end of our stay she found herself with a nice set of used golf clubs. Oh boy, there goes the neighborhood.

Not having quite enough fun yet we headed up to Bend, Oregon for five days that turned into seven. More swimming was to be had in Bend's new 7.6 million dollar public swimming complex. This place was unbelievable. Four pools including a big slide, 50 meter olympic pool, diving pool, kiddie pool, jaccuzzi, you name it. Other communities should look and see what they've done for the younger generation around there. Spencer had a blast. After a couple days we headed just down the road to Sunriver where Mom and Spencer went a little overboard with the golf thing. They both had lessons nearly every day and spent hours on the driving range using our coupons for free bags of balls and scavenging other balls to hit. Turns out golf's pretty inexpensive done Caserio style. Dad kind of just hung out and let them have their fun, constantly teeing up balls for Spencer to whack. We thought we'd be doing some more swimming but unfortunately the weather got pretty cold after a front went through. But still nice for golfing. Spencer actually improved dramatically and is pretty into it. If he shows continued interest in something we go with it. He's not the toughest, most aggressive little dude, thank goodness, but he seems to excel at technical sports like golf and skiing. Mom went bananas hitting golf balls too and finally, on the last day, we dove in and played 9 holes late in the afternoon. Far to little space to discuss the hilarity that ensued with that round. Mom's hooked though.

We got home the night before school started, got up in the morning and got Spencer off to school, just like your normal family. It really seemed that that was what we had finally become, a normal family. Well, we were wrong. Once you enter the serious medical world it takes a long time to get out of it. On Thursday evening we got a call that one of Spencer's classmates had been diagnosed with the mumps. It only took three days of school for us to be tossed overboard. We emailed Dr. K this news and she was quite concerned about this possible exposure. We were ordered to get Spencer a dose of IVIG within 48 hours and to take him out of school for 21 days. Friday morning was spent on the phone and the rest of the day was spent hoofing it all the way up to Stanford and back. Now it would seem Spencer gets an extra 3 weeks of summer, and the parents don't get some time to get stuff done after all. Because there are at least two kids in his class that have not been immunized Spencer cannot go to school. If either of those kids comes down with the mumps then the 21 day clock starts anew. And behind all this is our own paranoia about what might happen if Spencer gets the mumps. He won't be able to start up again with his own immunization shots until 6 months after he is off his cyclosporine.

So it's all kind of ironic, last year he couldn't be around any kid for 30 days who had a live vaccination shot. Parents were told to please vaccinate their kids well before school started so Spencer would have a chance to attend. Of course several didn't and Spencer missed the first 2 months of school. Last year he missed school because kids DID get vaccinated. This year he's going to miss school be cause some kids DIDN'T get thier vaccinations. When Spencer was an infant and toddler we certainly debated the pros and cons of getting vaccinated, but the reality is that getting vaccinated is as much or more about protecting other kids as it is about protecting your own. Now Spencer get's penalized, and Blue Cross gets a nice $4000 treatment bill. No, we are not a normal family who gets to do normal things, try as we might.

All this missing school may prompt us to head back to Duke a bit early. Spencer is possibly nearing the end of his cyclosporine (immune suppressant drug to prevent rejection) and Dr. K wants to see him for a quick skin check before she gives the final okay to stop. We were going to go near the end of October but now we may go earlier if it will reduce the amount of school Spencer will miss. We have to wait the 12 to 16 day incubation period before we can head that way to make sure everything is good, but by then Spencer will be almost ready to go back to school. We haven't decided what to do yet. But the bottom line is Spencer is doing super fantastic. His skin is totally clear. He is full of energy and is a very happy kid (well, most of the time if you know what I mean.) You can bet we'll make the most of whatever is thrown our way.

Thanks so much for checking in and hope everyone enjoys the last few weeks of summer, whether you're in school or not.

Mom, Dad, and Spencer

Sunday, August 13, 2006 0:59 AM CDT

Day 829

Another long while inbetween updates. When that happens it means two things: 1. That Spencer is doing great. And 2. That we don't have time to sit down for a half hour and type an update because things are so crazy. As we came out the other side of this struggle, transplant and all, we've literally found ourselves 2 years behind. So we're trying to do some of the projects that we maybe would have done had we not been transported off the planet temporarily.

Back to number 1. Spencer is doing fantastical. He just graduated from level 2 swimming and is looking forward to level 3. Unfortunately swim lessons are over for the year, at least at Cuesta College where they have the program. He has really turned into a great swimmer. He has perfect form, complete with side-breathing, big arms, and great kicking. No gulp and go for this kid. He's also very proud that he can jump off the high-dive with no problem. Pretty good for a 5 year old. Mom wouldn't go off that thing. It's also a big help that his friend Matt does the swim program with him. They push each other and are both doing great. Matt even does flips off the low dive. Also pretty good for a 5 year-old. Big news is that Matt is going to be a big brother in a couple months so exciting times for the Hume family.

Speaking of the boys pushing each other, Spencer has always been very freightened of the ocean. He wouldn't even go near the wet sand for the longest time. Don't know why that was but it was disconcerting for Dad especially, having practically grown gills from so much water time growing up. Well we bought Spencer a boogie board and there has been a stunning around. With some help from watching Matt boogie board, and even stand-up surf tandem with his dad, Spencer has taken off in the ocean. He rides the waves in on his boogie board, jumps up and down as the whitewater comes in, and has even stood up on a surfboard (tandem of course) several times. It's been super fun and he's very happy with himself. It's also been a very nice summer, weather-wise, with tons of nice beach days. There's been very few days that the fog hasn't cleared.

Spencer didn't do much summer school this year but he has attended school for the past three weeks or so. He always enjoys school, once you get him there. Summer school is over now though so we're trying to figure out what to do for the rest of the month. Mom may head to Tahoe for a visit with Gramma Betty and Pappa Verne. And we may hit Oregon for a few days but nothing has been decided yet. We were going to do some camping but Dad had a bit of a problem last week. He went off to Baja California for a week for some filming and time off. The trip was fantastic until the last day, when, long story short, something caught fire in the back of the truck after everything was packed up. After luckily seeing the fire and a 500 yard sprint to the truck, I put the fire out just in time. Probably was within a minute of watching the entire thing burn to the ground, 40 miles from the nearest paved road. The truck itself was undamaged but ALL the camping gear, pretty much everything in the back of the truck was toast, with significant fire damage to the truck shell. All the stuff was nearly brand new since we returned from North Carolina at the end of 2004. Pretty big blow, but it's funny how we've just shrugged it off as not that big a deal. I guess things are firmly in perspective for us now. But anyway, no camping in the short term.

That's about all that's been going on, but we did have one of those, "oh god, what kind of parents are we?" moments yesterday. Being rabid NASCAR fans we absolutely HAD to go see the new Will Farrell movie Talladega Nights. (oh, and by the way, did you see Jimmie Johnson at Indy the other day?) We weren't Will Farrell fans at all, but this movie was laugh-out-loud funny. Maybe we benefited from being race fans but it was definitely a great time. At first we weren't going to take Spencer because it's PG-13 and he's never seen anything like that. But circumstances unfolded to the point where we didn't have much choice, so we took him with us. Grampa Ernie and Gramma Kristie went too. How bad could it be anyway? And he knew it was about NASCAR and wanted to go. It wasn't like it was going to scare the bejesus out of him like a Lord of the Rings or Pirates of the Caribbean. Anyway, there was some foul language but not over the top or anything, and some serious misbehaving. There was one scene where Ricky Bobby's dad was trying to get him the courage to get back into his race car, having been scared by a big crash. Ricky's dad said something like, "I'm just trying to get you to get your balls back, son." The theater was quiet at the time and right after that line Spencer said, in a loud voice, "Dad, he's looking for his balls." Everybody in the theater heard that come out of some cute little 5 year-old's voice and everyone burst into laughter. We, of course, and especially Mom, were mortified. Grampa Ernie was rolling on the ground laughing, a very proud grampa he was. Anyway, we got through it. We thought it was great, but Spencer prefer's Herbie.

Medically, everything is steady as she goes. We're pretty much at the end of our first three month segment since the two-year checkup so Dr. K should be letting us wean to the final stage of the cyclosporine. We should be able to do this because Spencer's rash has been mostly non-existent. He really hasn't had a flare-up since we were in North Carolina, which seemed mostly weather related. We're hardly use any steroidal creams anymore at all, just moisturizer. Hopefully this will keep up and we'll get completely off cyclosporine in another three months.

Thanks for checking in and hope everyone has a good end of the summer.

Mom, Dad, and Spencer

June 24, 2006

Day 779 interim update:

All new pictures in the photo album of our trip to North Carolina. Spencer had his endocrin appointment at Stanford last Wednesday and he is doing well. We also got to visit Lisa Wan, who took us under her wing, letting us crash at her pad near Stanford back on frontline treatment and then reinduction. In other words, she made life tolerable when it certainly wasn't so we can't thank her enough. For some reason we just never could hook up since we've returned from North Carolina so this was the first time we've seen her, or she's seen Spencer in over two years. It was a great reunion. A nice pool was under construction two years ago and it is done now so we hung out in the 90 degree weather poolside. Very nice.

Now we're at Tahoe for a few days, continuing to enjoy the 90 degree weather, and more pool time. Spencer is eager to pick up his golf game with Gramma Betty and Pappa Verne. Hope everyone is enjoying the warm weather after a long winter.

Mom, Dad, & Spencer

Update from June 15:

Day 770

Sorry again for the long delay in updating. Adding normal life back to the mix, plus still dealing with the medical side of things, allows little time left to sit down for an update. Be we need to because we've been to North Carolina and back since the last update.

We all took off on a Corporate Angel Flight near the end of May, courtesy of Capitol Mortgage. This flight was truly amazing. The plane was to take us from Santa Ana to New York, a two day layover, then from New York to Raleigh. But the plane was flying back empty so they rerouted the plane just for us, not only flying us direct to Raleigh on their way to New York, but also flying the plane a couple hours closer and out of LA to Camarillo so it was much easier for us to meet the plane. This was really unbelievable and we can't thank them or Corporate Angel Network enough.

This flight actually put us in North Carolina several days earlier than we expected so we took advantage and visited Asheville for three nights. Mom loves that place. Spencer and Dad spent a lot of time in the pool. After Asheville we headed to Charlotte for some NASCAR action. We bought tickets to the Coca Cola 600 but were afraid to take Spencer there (even though we had inside seats) because it's the longest race of the year and we figured he wouldn't be able to handle it. So, we bought tickets to the shorter Busch race the night before, which was only a 300 mile race, plus, Jimmie Johnson was racing his Lowes 48 car in that race so Spencer would be happy. Everything went really well - Spencer enjoyed the race, even getting flipped upsidedown by the track mascot, Lugnut. That was Spencer's highlight of the night. And Jimmie did okay, finishing 7th. And the day before we went to see Spencer's girlfriend, Courtney, at Hendrick Motorsports. That was great and Spencer got to meet several new girlfriends who were heading up the Jeff Gordon Foundation. But Courtney got all the hugs and kisses so she's still number one.

The next night, we left Spencer in the capable hands of our friend Alan White, who not only has a house right on Lake Norman, but also has a motorboat. Spencer had a great time with them, even going to the zoo, while Mom and Dad went to the race. Spencer never even missed us. In fact, when we got back from the race Spencer wasn't even home. He was out eating pasta at Brixx Pizza at 11 PM. A great time was had by all. Unfortunately Jimmie didn't win, but he did the next best thing by finishing 2nd so we were happy with that.

The next day we had to be at Duke for Spencer's tests. This was Memorial day so the hospital was very uncrowded and everything went pretty much like clockwork. Then Tuesday was Dr. K day. It was a long day, of course, but his checkup went very well, in a big-picture kind of way. We were hopeful that we would be able to stop Spencer's cyclosporine completely and then be able to get his port removed sometime this summer. Well, that didn't go as planned. Spencer didn't really have any rash, but his hands were fairly pink, possibly caused by the beautiful but hot North Carolina weather we had the whole week, and his scalp was flakey. Dr. K said that meant there was still GVHD present so not only did we not get to stop the cyclosporine but we had to go back up to the lowest dose twice a day instead of just once. She put Spencer on that level for three months, then, assuming he's still doing well, the once a day level for another three months, then stop. So, we've got a guaranteed 6 more months of medicine. That puts us well into next winter, which means Spencer will have to keep his port through all of next year's cold and flu season - another year in other words. This keeps higher travel and hospital restrictions on us as well. We were definitely hoping to ease out of that, but it's not to be. This will be by far the easier route should something flare up if we take Spencer off his meds too soon. Dr. K is A number one so we'll follow her instructions without question.

That was the bad news, even though Spencer is doing great. The good news is that we officially got to take the "L" word off the table. We kind of knew this already but we got Dr. K to say it. 2 years post-transplant with unrelated cord blood and we're out of the window for that stuff permanently. Of course we'll never really stop worrying but that is a big big big big big thing. Pretty much the biggest thing, ever. So, big picture. And we've already got the results of his immune function test back and they are 100 percent normal. So we're just dealing with keeping any skin rash in check, and keeping up with the medicine and creams. Pretty much steady as she goes.

That was the end of Spencer and Mom's North Carolina trip, but Dad stayed another 10 days to do his final filming project out in Cape Hatteras. We're all home now and are planning on having a fun summer. Spencer is out of school and taking his first swimming lessons of the Summer. Next week we'll head to Stanford for an appointment and then to Tahoe for some Gramma Betty and Papa Verne time. Spencer will surely pick up his golf game, some serious swimming, some biking, and perhaps some fishing.

Unfortunately two nights ago Spencer did spike a 102 degree fever for no apparent reason. This earned us another expensive trip to the ER, but by the time we got to the ER (we took a little longer than we should have) his fever was gone, so we did nothing. It was unexplained but we'll take it.

We've got some pictures to put up so I'll try to get to that. Spencer's excited for me to put up a picture of him and NASCAR driver Robby Gordon, who we met in a restaurant in Charlotte. Spencer saw him and went right up and said hi, and then proceeded to tell him his life story, showing him his port, and wowing him with his knowledge of NASCAR. Fortunately he answered correctly when Robby asked Spencer what number car he drove (The 7 car for you non-NASCAR types). Robby was great, even plopping him up on his lap and talking to us for a good 10 minutes right at our table. We weren't prepared for how excited Spencer got about meeting a NASCAR driver. It was cool.

Thanks for checking in and we hope everyone has a great summer.

Mom, Dad, and Spencer Rocket

Cinco de Mayo 2006

5, 4, 3, 2, 1...Hurraaaay!!!

Day 730!!

aka Month 24

aka Year 2!!!

Happy re-birthday Spencer Rocket!

Today marks exactly 2 years from when we emptied the life-saving contents of that little red bag of stem cells into Spencer's blood stream. Life since then has been a series of steps focusing on the next milestone. First was engraftment, which was around day 9, then hospital discharge, which was around day 28. After that we were focusing on slightly bigger chunks, like getting to platelet engraftment, and getting beyond the risk of the more serious types of GVHD. Then we were focused on the 100 day mark, then the 6 month going home mark, then the 1 year mark. Besides providing distraction while focusing on these steps, the real importance was to get further and further away from the date of relapse and transplant. Statistically, the further away Spencer gets, the better. And some good things can be said about reaching the 2 year mark, and we'll just leave it at that.

Technically we should be at Duke this week for Spencer's 2 year tests and checkup, but we've put it off for several reasons. As such we'll be unable to attend the Rainbow of Heroes Walk at Duke this year, which is this weekend. We'll miss seeing some of our tranplant friends, including Jared and his Mom and Dad. That's a bummer, but at the same time we won't be trying to do the tests and checkup on Dr. K's most crowded week of the year. We're going to go later in the month, either so we can attend a NASCAR race in Charlotte again (there's 2 of them) and/or so Dad can more easily stay for a schedule film shoot out in Cape Hatteras.

We did get the good news that we can finally go down to Spencer's final weaning stage for his cyclosporine two weeks before our appointment. His skin has stayed rash-free for several weeks now so we're going to get the go-ahead to wean as long as things keep looking good.

We did get one last ski trip in last week and we finally had some nice weather. It was great spring skiing and Spencer was ripping again. Unfortunately, because of Spencer being a poopyhead and his parents not being quite as forcefull as they should have been, Spencer now has a pretty chapped lip and is quite miserable. He possibly seems to be getting better now. Let's hope so.

Now Spencer is enjoying school and, as usual, hanging out with mom and dad. There hasn't been much else to do lately because the weather has been sucko foggy this spring. Looks like next week will be better. He was extra happy last Monday when he watched Jimmie Johnson win the latest NASCAR race, as were we.

That's about it. We'll certainly have a little family re-birthday party tonight. Please wish Spencer a happy re-birthday in his guestbook and we'll read them to him tonight. Thanks so much for checking in.

Brian, Kerri, and Spencer Rocket

ps. small update on our house break-in last October. As you may have read in a previous entry, they caught the guys, but they were only able to charge one of the guys with our case (the others were charged with other burglaries though). Monday was the sentencing hearing and he was sentenced to 4 years and 4 months jailtime. We were unable to attend the hearing but we did write a letter describing some of what we thought were extenuating circumstances in hopes that the sentence would be at the maximum, which is was. And the letter will be permanently attached to his case file for any subsequent parole hearings. Otherwise, we haven't totally recovered from the experience but we're getting there. And we could say the same about Spencer's transplant.

Thursday, April 6, 2006 1:55 AM CDT

Day 700!

(all new photos in the album...sorry for the wait)

Once-a-month updates. It wasn't too long ago we dreamt about stuff like that, and now it's here. Spencer is doing fantastic, enjoying school, enjoying skiing, enjoying Animal Planet, enjoying eating, sleeping, snuggling, all of it (except putting creams on twice a day...definitely doesn't enjoy that). Once again we have been doing quite a bit of skiing. Methinks Mom is trying to make up for lost time. Good year to do it as Mammoth Mountain just broke it's all-time snowfall record. It's April and they have a 22 foot base still. We're considering a 4th of July ski trip.

And speaking of skiing, Spencer is definitely a little ripper. It has been the best exercise for him. Of course it's a bit difficult to get a little kid to exercise, particularly when they need it medically, but making skiing fun, with the help of Kathy Copeland and her incredible instructors at Disabled Sports Eastern Sierra in Mammoth, Spencer has not only gotten much stronger and leaner, he's also blossomed in his self-confidence and ability to keep up with other kids his age. And certainly it doesn't hurt that he seems to have some natural talent when it comes to skiing. He skis in total control, can go down some black diamond runs, hits the funbox in the park (see photos for that one), goes in the half-pipe...heck, he even spent a while trying to ski backwards after he saw some hotshot park monkey fly by him going backwards. It's pretty great to see him get determined about something. Now he even yells at us to, "get going you lazy guys!" There were times...a lot of times... when we were seriously questioning ourselves about trying to get him to ski, but now it all seems to be paying off. Next year we wont be able to keep up with him.

So two weeks ago we spent some time in Mammoth, where our good friend Kevin Pritchard joined us for some snowboarding. Spencer was so happy to have Kevin and his girlfriend Lindsay to play with and hassle instead of just having his parents around. Spencer successfully claimed Kevin's girlfriend for himself by the end of the week. After Mammoth we headed north for Spencer's monthly Stanford appointment, but of course stopped by Gramma Betty and Papa Verne's house in Tahoe for a few days first. Spencer's cousin Marianna was there too so there was some serious cuttin' up the house going on. Those two got along great. Spencer got a couple days of skiing in, one with Gramma Betty which was really cool. We told her she better go skiing with him because by next year she wouldn't be able to keep up. We were wrong, he already leaves her in the dust.

Then at the end of last week we finally made it to Stanford. His checkup went really well. We have not been able to continue his cyclosporine wean (immune suppressant) but we have been able to take him completely off his blood pressure medicine. So he is essentially down to just the cyclosporine and voriconizole, an anti-fungal med, each twice a day, plus a once-a-day dose of acyclovir, which helps fight off some potential things. So all in all his medicine routine is getting easier and easier. His main issue is still his GVH skin rash, but even that is pretty minor. He had some wierd allergy-type rash at Stanford. He also had it at Tahoe and would itch all over from time to time. It wouldn't respond to his creams but it would respond to benadryll so it apparently was some viral thing. From right after his appointment up to today his skin has been 100 percent perfect just with twice a day moisturizing lotion...the best it's been by far. We are very excited about that but Dr. K will not let us wean any more cyclosporine until she gets to see him in May. Some other good news is that now that we're mostly through the cold an flu season we don't have to do the IVIG and Pentamadine next month, meaning we don't have to do our monthly Stanford checkup again before Duke. We will have to draw labs somewhere most likely but that's okay.

And the last medical note is that Spencer's two front teeth are loose, with the adult teeth already poking through behind. Seems a tad early considering Spencer's treatment and all but everything seems normal (we did see the dentist a couple days ago) and Spencer's very excited to get a visit from the tooth fairy. Although he somehow has the idea that a tooth is worth $500 now. Kids these days!

Lately Spencer's been enjoying school and getting very excited about Easter. He loves Easter because of all the chocolate, at least that's what he told us. So he's got Easter week off school then he's back at it. Mom's going to try to squeeze one more ski trip in before we head back to Duke for Spencer's 2 year checkup...that's right 2 years! Seems like time has flown, but at the same time it seems like it's taken 5 years to get to this point, and we've aged about 10. No matter, we'll take it. We're the luckiest unlucky people on the planet. Thanks for checking in and have a great Easter.

Mom, Dad, and Spencer Rocket

Tuesday, February 28, 2006 2:55 AM CST

Day 661

Spencer continues to do great. I say that just after we finished cleaning up a humongous mess because Spencer threw up all over the place. Completely unexpected and we don't know what caused it. He says he feels fine and he certainly seems to be fine. He did get very excited because Gramma Marge and Grampa Fred are here. And he ate a bunch of different stuff all at once, including some pizza. Then he layed down to go to sleep and shortly thereafter it all came out. Big mess, but hopefully end of story. He seemed to go through throwing-up sessions every month or so for a while post-transplant but hasn't done that for several months now. We're going to chalk this one up to a normal 5 year-old misshap for now.

Skiing and school has been the routine for Spencer lately. Dad got home from his trip in the tropics and the next day Spencer and Mom whisked Dad off to go skiing, where it was 0 degrees. One morning it was minus 11 up on the mountain. Can you say "temperature shock"? But the surprising thing was how well Spencer handled it. When he went out skiing he never complained about the cold. He did whine a couple times about being tired but overall he did great. He graduated off his edgie-wedgie (rubber cord that keeps the tips togetherr) and is shredding down the hill. Skiing really does seem to be helping with his strength too. He still has a little paunch in his tummy but his legs are getting the typical active skinny kid look.

After the trip Spencer's friend Matt wanted to go skiing for the day at our local mountian (4 hours away, so not exactly local but close enough). Mom was pretty tired but they went anyway. It was the first time Spencer went skiing with a friend and it turned out unbelievable. Spencer and Matt went nearly 4 hours straight and did non-stop runs up and down. They were racing each other down the hill. Mom was actually skiing, able to do turns since the kids were going so fast. That was really cool. More skiing is on tap for later in the week.

Spencer had his monthly appointment last week at Stanford and that went really well. Well, all except for the crazy Stanford Day Hospital putting us in a annex room that was like some storage room/hallway/wind tunnel thing. Sure we're 22 months out but Spencer's still a transplant patient on immune supressant drugs. You better believe we complained. When the charge nurse was in there hearing our complaint there were a minimum of 10 people in the room, none of them having to do with us. And when the patient relations person was there Spencer crawled down onto the dirty floor to play with some stuff. Absolutely unbelievable. We're pretty much ready to switch hospitals. After an hour or so they did move us, not to a regular room but another storage type room. But at least there wasn't any traffic. The worst thing is they've tried to put us in that room several times before, the first time was just after we had returned from Duke. Kind of figured they knew we weren't going to put up with that kind of treatment, but I guess not.

Spencer also went to see the endocrinologist again to check his cortisol level since we completely weaned him off the hydrocortisone. We still don't have those results but he seems to be handling fine. One concern is that Spencer hasn't grown for several months. He shot up 2 inches right after we got back from transplant, which was really really good. Then he stopped, then he grew another half inch just before last summer. Then he stopped. And that's about it. Nothing since summer. He's dropped below the 20th percentile for height, after being in the 100 percentile as a toddler. Dad is 6 foot 5, and Mom is 5 foot 9 so you'd expect him to be tall. Spencer's also lost some more weight. So this is something that we're watching. Hopefully Spencer will start a little spurt here soon.

And finally, we're pretty devastated by a radical deterioration in health of one of our best friends. Dad worked and windsurfed and surfed and fished with Clay for years throughout the eighties and nineties. While we were away in North Carolina Clay was diagnosed with a very bad type of brain tumor and with a little inspiration from us, I guess, they ended up being treated at Duke by the brain tumor department that's headed up by Dr. K's husband. Pretty strange turn of events. Well the clinical trial seemed to be working a miracle before a relapse not too long ago. Well, suffice to say things are not going well. Please say a prayer or two for Clay and Julie, and 13 year-old Mac as they go through this. In the past few years we've had at least three super close friends hit with fatal types of cancer and the only common denominator has been that they've all been the best types of human beings on the planet - fun, honest, hard-working, happy, with nary a fault. What gives?

Kerri, Brian, and Spencer Rocket

Friday, February 10, 2006 3:54 PM CST

Day 644

Another month, another update. Sorry for the infrequent updates but you'll soon read why. It's been rough but Dad's been on a two week filming trip without Mom and Spencer. They were none too happy about Dad being gone that long. That's not really a normal situation at any time but it is an indication that we are closer than ever back to the everyday world. So Mom and Spencer have been on their own, taking care of the business, going to school, etc. etc.. It seems it was a bit of a struggle for them to hit their stride, getting to school late and whatnot, but things seem to be going smoothly now.

From all reports Spencer has been a really good boy and has even kicked his pasta with white sauce for every meal habit. That is good news to us as we've been getting worried about his intake. During transplant it was great because anything kids eat is a good thing. We were lucky that Spencer ate so well. But nearly two years later we'd like to get a healthier variety in there.

Dad missed Spencer's first parent/teacher conference. The school says he has made a lot of progress, especially socially. He's getting more interested in the academic stuff and willing to have directed learning with a teacher. He is bright with great verbal skills, although we of course knew that already, right? He has trouble still with fine motor skills and writing but he's working on it. Then there's the short attention span. Overall everybody is very happy.

Medically Spencer is still at the second to last level on his cyclosporin wean (his immune suppressant drug). It is very hard to progress so slowly on this. We really would like to get his mediport out in May when we go to Duke for his 2 year checkup in May. This will get us off any fever/hospital restrictions. Speaking of that, Spencer did come down with a 103 degree fever three weeks ago which earned us an expensive trip to the ER. All results were negative so we were able to leave the same night, avioding a hospital stay. He seemed to just have some bug he likely picked up at school. He did need the antibiotics to kick it but he did get better in a couple days. Finally, we did stop the cortef (hydrocortisone) entirely a couple days ago. Hopefully he will handle this okay and show some adrenal gland function when we go for his monthly checkup at Stanford in a week and a half or so.

Mom and Spencer have been waiting patiently for Dad to get home so we can all go skiing again. And that is the plan when Dad finally gets back from his rough assignment, which should be late tomorrow. What assignment is that you ask? How about filming for two weeks in the British Virgin Islands? We've been cruising around the islands for two weeks in two 50 foot monohull sailboats and one 47 foot catamaran. Right now, as I type this update, we are moored off the Bitter End Yacht Club, where you can stay for $800 per night, but there is free internet out here. What is the world coming to? Just downwind is about a 130 foot motor yacht with a giant helicopter on top. Just upwind is Necker Island, where Sir Richard Branson lives. You can rent his private island for between $19000 and $40000 per night. Yes, it's been rough. Now you know why Mom and Spencer weren't too thrilled to be left behind. But what am I going to say, no? Next time the whole family will come. The amount of white sand that Spencer could dig up with his shovel and dump truck is staggering. I think he'd like the turtles and fish too.

Thanks for checking in and Spencer, I'll see you tomorrow.

Dad

Friday, January 13, 2006 1:48 AM CST

Day 616, and Happy New Year!

At last, an update. Things have been just too crazy, what with the holidays, the business going crazy, us deciding to go to the mountains last week, and Dad with a big video deadline that sort of was today (thus the update). And as we like to do things all at once, we've got a few new photos in the album too. I think that's about the longest we've gone without updating.

Spencer's been doing really well, although he is fighting a cold right now that, surprise, surprise, he seems to have caught from a girl that lives at the B&B we stayed at in the mountains. Spencer seems to have a handle on the cold, but not Mom. She's got it good. Dad is just waiting for the hammer to drop. Cootie kids. At least we've stayed away from the flu so far, as California is the only state that is at "epidemic" stage right now. Nice.

Medically, other than the cold, we have been able to wean Spencer's cyclosporine, his main immune suppressant drug, down to 0.1ml twice a day. This is the second to last stage before we cut it alltogether, which is obviously the goal. The fantasy wean is to be at each level for a week before proceeding with the wean. The reality wean is to be stuck at each level for 4 to 8 weeks regardless of the circumstances, which is probably a good thing because better safe than sorry. With each wean we must watch for an increase in his skin (GVHD) rash or skin dryness. He does go through stages of rash/dry/clear skin from time to time but it doesn't seem related to wean times, nor is it anything like rash he's had in the past, in the summer for example. It does seem to be related to weather, or pool or sun exposure. We keep his skin well moisturized and his face and hands coated with sunscreen. And we'll hit rashy spots with steroid creams from time to time. With all he's been through you'd think putting a little cream or sunscreen on would be no big deal. Oh, my, gosh...think again. Sheesh!

The endocronologist at Stanford is also having us wean his hydrocortisone in hopes of waking up his adrenal gland. This pill has been three times per day and simply replaces they level of steroid the body produces naturally. Chemo/steroids/radiation knocks out the adrenal gland for a while, sometimes permanently. They fully expect it to come back but it can take 2 years or more. Last few times Spencer's had a cortisol level taken with his blood draws it has shown no natural cortisol production. We just went to the second wean stage, which means we are down to one dose per day. So far Spencer's handling it great. Lack of energy could be one symptom if his level was to fall too low.

So Spencer had a great Christmas. He got lots of gramma and grampa time. And he got the Hot Wheels car(s) and teddy bear that he asked Santa for (among other things). He also got a new ski suit and helmet to replace the ones that were stolen (more on that later). And we headed to the mountains last week where we got there just before the big storm. Spencer had a fantastic time. It was a struggle for the parents to get much time on the mountain but it was offset by Spencer's progress. He had three lessons with Cathy Copeland at Mammoth's Disabled Sports program, and he skied wtih us a few times. He never used the tether that he had on last year and took to it like a natural. By the end he was going down blue runs with no problem. He has perfect form, turns at will, doesn't get out of control, and has a lot of fun, especially while throwing snowballs. Pretty cool. Could we be prouder of him? I think not.

Spencer's skiing this year really showed us his progress. Many people may be away from Spencer for several weeks or months at a time and when they see him again they really remark about his progress/strength/growth, you name it. We see him every day so we don't see dramatic improvement like that. But in this case, the last time we were in the snow, which is a very physical environment to be in, was the end of last winter. At that time he struggled to walk in his boots on the snow. He had a hard time playing in the snow and tired easily while skiing. What a dramatic difference the first day we hit the snow this year. The first day was absolutely dumping snow and we played and sledded, and rolled, and threw snowballs, and jumped in 5 feet of powder, and Spencer was great. He was strong, didn't complain or get cold. And he could ski for a couple hours by himself with pretty good exertion. It was a shock to see that progress.

Now Spencer's in school waiting anxiously for his next trip to the mountains. His Stanford appointment is on Tuesday of next week.

Just before we went skiing, fellow Duke transplant buddy Parker and his family came by to visit. They live about 2 1/2 hours away in Fresno. Spencer went swimming with Parker and Connor and had a great time. Then the whole family stayed overnight with us the next day, which was really nice. All the kids had a ball. Kind of funny to step back from that, watching two miracle kids playing together like it's no big deal. It is a big deal. The next day Spencer took us all on a tour of the elephant seal colony before Parker and family headed home for New Year's Eve.

That's about it except for the story about our house break-in. We got an early Christmas present when the detective called and told us they caught 3 of the guys who robbed our house. They are all bad people, all with prior convictions, and as such should be spending an extended period of time behind bars. What a waste. It's so irritating to see how all the great families we've met struggle to battle all these horrible diseases, then you get these complete losers that just toss their lives away by getting hooked on meth. It's so addicting and damaging to the nervous system that only 5f people on meth can be rehabbed. The other 95ither end up in prison, or stay tweaked. And many eventually die. And it's cheap and it's an epedemic throughout the country. And you don't hear enough about it. I suspect there will eventually have to be a call to arms to battle this insanity.

How these guys that robbed out house were identified is certainly a bazaar story. We've known about this for a couple months but were bound to secrecy by the cops. There was only one thing, as far as we could tell (well, two if you count our Jimmie Johnson NASCAR ticket holders) that they took that had absolutely no monetary value. As it turned out, that one thing is what nailed them, thanks to Spencer and his transplant. If you can possibly believe it, the burglars took his Duke Pediatric Transplant photo ID card. It's just like any photo ID card that the doctors and nurses wear around their necks in the hospital. And they make these up for the patients in unit 5200 at Duke so they can have a special ID of their own. It's completely non-official. Just for fun. I was in disbelief when the detective stated that this thing had been seen. We didn't even know it was gone. I ran upstairs and sure enough...gone. Bad move. Someone saw this thing in one of the guy's cars and tipped off the police. They probably would have been caught anyway because of some survellance footage of them using our credit cards and a fingerprint in our car, but a positive ID was made right then and there (thus being able to match the fingerprint to someone). This was several weeks before any arrests were made, which certainly tested our patience. But the cops were patient in building their case and actually arrested these guys in the act of another burglary, evading the police, and actively smoking meth all at the same time. Pillars in our community in other words. Unfortunately we did not get the ID badge back (or anything else for that matter), which we liken to an Olympic Gold Medal. And now you know the rest of the story.

Finally, after the lameness contained in the last two paragraphs, our friend Ben Murphy did not win his fight against AML, after three transplants. What a struggle they went through. We know Ben is at peace and hope the Murphys can heal a bit...somehow.

Thanks for checking in.

Kerri, Brian, & Spencer Rocket

Thursday, December 15, 2005 2:56 AM CST

Day 587

Long time - no update...again. We like that. Spencer has been doing fantastic lately and there's not much to report on the medical front. Again, we like that. The main thing we're watching is Spencer's skin. We're watching for dryness and rash while we are weaning his cyclosporine (his main immune supressant drug). He's had some rash and dryness from time to time but it easily goes away in a day or two with creams. We are hopefull to make another leap down in the wean very soon. Spencer has a checkup at Stanford on Tuesday so maybe we'll see if Dr. K wants to go for it then.

Otherwise Spencer's been enjoying school. It's a bit of a struggle to get him there on time in the morning, of course. But once he's there it's hard to get him to leave sometimes. I'm sure that will change before he's a teenager. Friday is the last day of school before Christmas and the kids are going to put on a small play for the parents in the afternoon. Spencer is playing a bear. That should be cute, or interesting, or both.

We are still struggling to recover from the house burglary that happened while we were gone for Spencer's checkup in North Carolina in October. The homeowners insurance company is dragging its feet, our car is still in the body shop, and no one has yet been charged with the crime, although progress has apparently been made in the case. Frustrating is the operative word. We have installed an alarm system, however. We also have a big ol' safe. And we're doing some window treatments. We're also looking at installing a gate on our driveway. We're a bit late with all this stuff but we're pretty certain no one is going to be breaking into this house again.

Our plans for the holidays are pretty basic - we're not going anywhere except to Gramma Betty's for Christmas day. Auntie 'Chelle is coming down to spend Christmas with Spencer so we are all excited about that. As you can see from the photo above Spencer has lost his fear of Santa, or at least did for five minutes last Saturday. Santa arrived on Fireman Mike's firetruck at the Pinedorado grounds in Cambria for a very cool event that the Lyon's club puts on for the local kids. Spencer had a great time and saw a bunch of his friends there, but when it came time to see santa...no way, no how. He wouldn't have anything to do with it. This is exactly what we thought would happen. But later, once the line went down to nothing, he just went right over and hopped on his lap. Mrs Claus gave him a toy and a candy cane and that was that. We were in shock. Spencer asked Santa for Hot Wheels and a teddy bear. Santa's response was, "Is that all?". I guess there were some pretty big requests earlier.

That's about it on the Spencer front. But one horrible and tragic thing happened recently, on no stranger day than on Spencer's birthday, and we want to extend our condolences to all friends and family affected by this. When Spencer was diagnosed in early September, 2003, Dad was filming in Baja California and had to get home somehow right away. Through the Baja network we got Dan Newman, an incredibly experienced Baja bush pilot from Orange County to fly down to pick Dad up. Dan has also been the long-time family pilot for the Baldwin family, who are offroad racers. The Baldwin brothers grew up just a couple blocks away from Brian in Laguna Beach back in the Seventies. Dan was flying Jason Baldwin, and two of his friends back from the Baja 1000 on Spencer's birthday when their plane went down off San Clemente. We'll always remember Dan as one of the first to come help us out when our lives changed so suddenly.

Finally, our friend Ben Murphy has had a few setbacks lately as he is recovering from his third transplant - this time a risky haplo transplant at St. Jude. Please send any spare positive thoughts and prayers his way as he continues the good fight.

Kerri, Brian, and Spencer Rocket

Sunday, November 20, 2005 1:56 AM CST

Day 563

Happy Birthday Spencer Rocket!!!!!!!

It's the big 5. He's been talking about turning 5 for what seems like months. And he definitely had a hard time waiting for it. He wants to get to his birthday as much as the parents don't want to get to theirs.

On Saturday he had a big birthday party at the house. He invited all his old pals like Matt, Sean and Roxy, and Sean Thomas, but he also invited all his new classmates from school. I don't know what we would have done had they all shown up, but there were probably about 8 of them, making for a perfect sized party. (Actually, Spencer's been inviting people to his party for a couple months - including Dr. K from North Carolina, Courtney and Beth at Hendrick Motorsports, Auntie Kendi and Uncle Dave from Florida. I'm not sure if Spencer noticed they didn't show up.)

We had a bounce house in the driveway and Spencer sold lemonade from his new "Rocket Lemonade" stand that Dad just build for him. Spencer sold a ton of lemonade because the weather was epic - sunny, windless, and 80 degrees, same as it's been all week. But he does have to work on his business plan. Drinks were only one cent, but he'd hand his customers their drink, and then give them a handfull of pennies. Pretty good deal.

Lots went on inside the house too, as kids had a great time playing with Spencer's toys...toys that Spencer never plays with. There were Hot Wheels, Thomas trains, construction trucks, legos and everything else strewn all about. Why is it that kids go nuts playing with other kid's toys but don't play with their own? We also had a pizza bar, where the kids could pile the toppings on their own individual pizza doughs. Most seemed to be content with cheese. And we had a NASCAR-themed cake...again. And finally there were presents, of course, and a pinata. A pretty full day, but Spencer was buzzing around all evening, long after everyone was gone and the parents pooped out.

It really was a great party, the first true kid-filled party that Spencer's had. It was so normal, not a hint of what Spencer's been through the past couple years. A good reality-check. Sunday (today, his actual birthday) will be mellow, with just a Mom, Dad, and Spencer party. And then he'll get a little party at school on Monday afternoon. Pretty busy guy, but it wont end there. Monday after school he'll be heading up to Stanford with Mom for his monthly stuff, plus an extra day on Wednesday for some endocrinology tests and another dermotologist checkup. Then it'll be Thanksgiving for another holiday. Busy, busy, busy.

Medically Spencer is doing very well. He did get a fever Saturday of last weekend and had to go to the Hospital for some cultures and antibiotics. Fortunately we avoided being admitted and just had to return the following day to finish the antibiotics. It did ruin a nice weekend, but we'll take it, especially because his fever was high enough that it could have landed us with a 2 or 3 day stay. The fever did go down on Sunday. It was pretty obvious that he had some viral/cold thing that came, not surprisingly, after his first full week at school. He seems to be able to fight stuff off pretty well but it could be a long winter. We're going to have to be careful as the flu is already out there.

Thanks for checking in. Feel free to wish Spencer a happy birthday in his guestbook - he still loves to get visitors there. And we hope everyone has a Happy Thanksgiving. Funny that we haven't seen the wild turkeys hanging around our house lately. Maybe they know something's up.

Mom, Dad, and Spencer.

Happy Halloween!!

Day 543

Spencer definitely raked in a record haul of candy whilst Trick-or-Treating tonight. He dressed up in his Jr. Chef's costume and stormed Auntie Kendi's neighborhood here in Florida, which is perfect for scooping beaucoup candy. Now that he's only a month away from turning 5 years-old he had the Trick-or Treating down pat. And could he be any cuter? saying "Happy Halloween" and "Thank You" like a pro. He just worked 'em. It was fun. Now we just have to stop Spencer from eating all that candy. He's never had a sweet tooth, but he does seem to be trying to develop one lately.

So, yes, we're still in Florida. We had planned on being home by now but we couldn't get a Corporate Angel flight until Thursday. We decided to take that instead of flying back commercial. And it gives us a few more days to cause havoc at Aunti Kendi's house..plus we get to delay going home to put our ransacked house back together. We are not looking forward to that. A bit of "Out of sight, out of mind", I guess.

We've been doing a lot lately and I suppose I'll cover it in reverse order. On Friday we finished up with four straight overwhelming days at Disney World. We were thoroughly pooped out after that. We know why they call it Disney "World" now, because it is a whole 'nother world. It was a huge shock for us bumpkins from little ol' Cambria. The overwhelming theme was that all of it would have been really fun...if it weren't for all the people, key word - overwhelming. Fortunately for us, Mom brought a note from Spencer's doctor, which got us a free "skip the line" card for everything, everywhere. Without that it would have been a total nightmare. In fact, it flat out wouldn't have worked. Spencer can barely wait for something for ten minutes. Putting him in a 60 minute line for a 40 second ride would have been pure torture. So it was with glee that we strutted on by everyone in line and hopped right on, everywhere. Although I will say that the qualification procedure for our "skip the line" card was definitely not worth it.

Spencer had never been to a theme park like that before so maybe he just wasn't preparred, but his reactions to most of the rides caught us off-guard. He seemed to dislike way more rides than he liked. He was so fumed after a couple rides that he was threatening us with bodily harm. It was pretty funny. There were a few rides that we definitely should not have taken him on. They were just too scarry. One bad, and we have to blame this on Mommy, was an obligatory ride through the Haunted House during the Halloween Party last Tuesday night. Not a good idea. Spencer's words after bad rides were, "I'm never going on that one again! ZERO! I'm just going to PUNCH you!" It was sad, but we were in hysterics.

Then there were some that we didnt' expect. He flipped out during the "Honey I Shrunk the Audience" 3D movie. He lost it during "Stitch's Great Escape". And we wont ever mention the "Back in Time" Dinosaur ride - ZERO. He was less than impressed with Pirates of the Carribean, Buzz Lightyear, the Jungle Boat ride, Splash Mountain, the fireworks shows...I could go on. It was pretty frustrating, but he's only four. But there were rides he did like - a lot. His hands down favorite was the crazy train - the Thunder Mountain Railroad roller coaster. We probably did that 5 times. He seemed to like Winnie the Pooh. He liked Peter Pan, the Safari ride at Animal Kingdom (because we were in a 4x4), and all the rides that go round and round and up and down - like Dumbo, the Astro Spaceships, and Alladin's flying carpet. And he loved Soarin' and Test Track at Epcot. That's about it. Oh, and he had a pretty good time at Typhoon Lagoon on our last day, when it was finally warm enough to hit a water park, along with everybody else who came up from Southern Florida because they didn't have anything else to do after hurricane Wilma.

Towards the end there, when we were so pooped out we decided that it would be a while before we come back, Spencer started to warm up to the place, saying he was coming back soon. We'll see about that. I'm sure Mommy will cave. All in all we did pretty well. We hit the Magic Kingdom, Animal Kingdom, Epcot, Disney/MGM Studios, Typhoon Lagoon, and Downtown Disney. A pretty good fete considering Spencer's legs poop out pretty quickly under those circumstances. He spent A LOT of time on Daddy's shoulders.

Before Disney we spent a couple days with Auntie Kendi and Uncle Dave. The weather before the hurricane hit was unreal - warm, overcast and perfectly still. We spent a lot of time on the ski boat. Daddy tried some wakeboarding, Spencer tried some tubing, and Mommy even went waterskiing. Forgive us if we don't share the pictures of Mom waterskiing and Dad wakeboarding. Then we hunkered down for the hurricane. Of course Orlando was well away from the storm but it was still blowing 40 to 50. Can't come to Florida without checking that out. We also had a nice visit with Spencer's transplant buddy Jared and Lynn and Don. That was great. They've been through a lot and Jared is thankfully making slow strides in the right direction. They are a strong family.

On the way down to Orlando from North Carolina, Mom planned a two night stop in Savannah, Georgia. For us West Coasters, Savannah was a unexpected surprise. The city is amazing in every way - history, architecture, preservation efforts, people, food, you name it. We've never been to a US city that had such history so visible and preserved. It a great place to be a tourist, but, one piece of advice - leave the 4 year-olds at home. Spencer was a poopy-head most of the time. But lucky for him we've forgotten about that now.

And that takes us right back up to our Dr. K visit, the reason for our trip out here in the first place. That went great as we mentioned in our last update. Medically, we've weaned his cyclosporine to 3 ml and Spencer's handled that really well - no increased rash to speak of and we should be able to drop down to 2 ml as soon as tomorrow. Otherwise Spencer's been doing great. This trip has been a big test for us - having Spencer away and travelling for such an extended period. Spencer's gone from home to San Jose, to Cedar Rapids, to Moleene, to Raleigh, to Charlotte, to Durham, to Savannah, to Orlando, to Disney World, to Orlando, and now off to Atlanta on Wednesday for our flight back to San Jose and then home on Thursday. As luck would have it we're flying with Duke Energy for the third time. We hope Kelly is our pilot again. That would be neat.

There you have it. Everything's gone pretty well...all except for that one incident at home while we were gone. You know, where they took all our stuff and mangled our house. But notice we didn't mention too much about that. Out of sight, out of mind...at least until Thursday.

Lastly, please send all your thoughts and prayers to our buddies Parker and Ben. Parker as he isn't feeling well and may have to up his meds significantly, and Ben as he recovers from his 3rd transplant. Thanks for checking in.

Mom, Dad, and Spencer Rocket,

Candy anyone?

Thursday, October 20, 2005 11:44 PM CDT

(10/30/05 - All new photos everywhere. Will get to the update tomorrow. Happy Halloween.)


Well we had our Dr. K, 18 month post-transplant checkup, and things went great. It was a pretty brutal day of kind of doing a lot and kind of doing nothing but waiting. Overall we were there for 9 hours. All Spencer did was his usual IVIG and Pentamadine treatments in the Day Hospital, which combined usually take maybe a little over 2 hours. Mom had mentioned that Spencer had a couple bloody noses a few days earlier so they added a CT scan as well. The CT scan, or I should say waiting for the CT scan, took pretty long, well over an hour, but otherwise Spencer had no other tests during this checkup. The main issue was for Dr K. to do a visual, especially of his skin, to determine whether we can continue with the cyclosporine wean. Besides these things we were just waiting, waiting, waiting.

We finally got to see Dr. K at about 7 PM and everything was great. Spencer's labs - good, skin - good, CT scan - good. Dr. K was very happy - good, good, good. We're going to take it slow, but we got the okay to continue the wean. Spencer got to go down to the 3ml point with the cyclosporine, which is the half-way mark. If all goes well and no further rash pops up then he could be off that and a couple other meds in about two months - a Christmas gift to himself maybe. So good good good on that front.

Wednesday, the day after our appointment we took off for Savannah, Georgia, which we used as a half-way stop on our trip down to Orlando. We're here right now, the weather is beautiful, and the city is pretty amazing. Being from California we've never experienced a city in the continental US with so much history, much of it preserved. It's pretty cool. We went on a trolley ride and a boat ride on the river. We ate candy and ice cream, you know, did the tourist thing big-time. The only bad thing was Spencer. He was pretty much of a pill and has been for a couple days. Mom was about to blow a fuse with him. Just when we're ready to throw him out with the bath water he reverts back to being the cutest sweetest kid ever and lives to see another day. I guess he just knows how far to push it. Hopefully he will start to snap out of this.

On Monday, after the race weekend, we were still in Charlotte and stopped by Hendrick Motorsports to say thanks to Courtney and Beth for the wonderful experience. I'd say that this is where Spencer's poor behaviour over the past few days just started to surface. He definitely could have been a bit more polite there. But we did end up having another great experience. Courtney took Spencer back to see Jimmie's winning race car. Jimmie's crew chief and brains behind the 48 car, Chad Knaus, was there. Spencer has met him a couple times before and he got Chad to autograph one of the pictures we had of them together. We also got a new picture of them together posing with the trophy that Jimmie won on Saturday night. It was really cool and I need to post those photos but all this travelling, clinicing (if that's a word), and still dealing with our broken-into house and finances, plus our business, doesn't leave us with time to do the cool things like post those photos. Hopefully in the next day or so.

Speaking of our ransacked house, not much more news there, besides that it continues to suck. The police do have our car. The stereo was definitely removed but we don't know the extent of any damage. The reality is that we don't really want any of our stuff back as much as we want them to be caught. It's definitely difficult to deal with this from across the country, but we're trying to see our trip through, rather than let them ruin this too.

As of Friday we are scheduled to finish our last leg down to Orlando. But, as might be expected with this trip, there is an extremely large hurricane trying to head to that vicinity. I suppose that to keep the excitement level at a maximum we should head down there as quickly as possible, perhaps even keep going down to the Florida Keys or something. But seriously, we may go down there as planned - at the moment it looks as though the track will take the storm well south of Orlando...but you know about that stuff. And we may elect to stay here in Savannah for a day or two more to see how things play out. One thing is for certain - even if the weather doesn't get really bad in Orlando, it's still going to rain. We could stay here and avoid most of that. Bad thing about staying here is, besides spending more money, that we're supposed to start our Disneyworld stay on Monday night. Sounds like the storm will be out of there by Tuesday morning, but what's travel on Monday going to be like? Would it be better to get there early as planned? We'll figure it out.

So that's it for now. Thanks again for following Spencer's adventures this week. Hope everyone has a great weekend and check back soon to see if I've got those photos up.

Spencer Rocket and Family

Monday, October 17, 2005 0:11 AM CDT

(All new photos in the photo album of our weekend adventure!)

Where to begin? So much has happened in the last 48 hours it seems like a blur. We have experienced the hugest extremes in people the last couple days - from the lowest the human form can go, to the nicest, most compassionate you can get. From the previous update you proabably know our house was broken into just after Mom and Spencer left the house for Spencer's medical checkup at Duke. The was substantial material loss, including our car and most of our electronics including a nice 23 inch LCD TV that we treated ourselves to as our personal gift to ourselves right after we returned from transplant in November of last year. We tortured ourselves as to whether we should splurge for some material object like that but we figured - what the heck? Well that's gone, along with our nearly new business computer (you can imagine what might be on that hard drive), video decks, and our postage meter - which, I might add is a Federal Offense, not to mention they couldn't possibly do much of anything with it. They also took a giant jar of coins that Kerri had been collecting out of Dad's change pockets for nearly ten years - every day for ten years Dad's change would mysteriously disappear from the counter into that jar. We're guessing there was over $700 dollars in change in there that we were going to put in one of Spencer's accounts - silly us. We had recently talked about how we need to get that out of the jar. Of course the worst thing was probably that they smashed Spencer's prized piggy bank that Gramma Betty gave to Spencer on the day he was born and took the whopping $40 he has saved out of it. We still haven't completely explained that to him. Lots of other stuff was taken too. Sounds like they had their car and our car full to the brim with stuff when they ran out of room and took off, possibly with the intent to return for more. We won't even talk about the mess they apparently made of our house. Sounds like some rooms were calf to knee deep with dumped junk and filed papers from one end to the other. Broken glass was everywhere including in our bed and in our washing machine. Obviously this was the lowest of lows in human behavior.

Positive news is how all the grandparents have rallied to take care of the house and some of the necessary communication while we are away. We definitely are greatful for all they have done. Also, the police have been great, being very thorough and determined to catch these guys. They do know of our recent family medical history and are on the warpath for justice.

With all this going on we were supposed to be heading for a hugely anticipated event - the NASCAR race at Lowes Motor Speedway in Charlotte. Several people went way out of their way to set this up for us, so much so that we began feeling a bit guilty that they would do this for us. Then we're heading for the speedway pretty down in the dumps, wondering if that's the sort of thing we should be doing right then. But Spencer was really looking forward to it, as were we, and it wasn't like we wanted to just sit around and mope while missing the race. We figured we could use it to escape from reality for a bit. Things got even worse when we finally left for the 2 hour drive from Durham to Charlotte a good 2 1/2 hours later than we had intended. Then we got near the speedway and took the back way in only to come to a dead stop over five miles away from the track. We probably moved 500 yards in half an hour. We were getting fumed and pretty much figured we'd miss the start and a good chunk of the race. That was our bottoming out point, but then things started to turn around, and fast. Traffic magically lightened up and we zoomed to the track after only an hour more delay. We called Beth, our contact at the track with Hendrick Motorsports and she was amazing. She was guiding us into the track while racing our way in her golf cart. Our VIP parking spot was taken so she pulled her charm on everyone in our way, took us through some closed areas and force a security guy to let us park fifty feet from the track. Then she crammed us in to the golf cart and parted the waters in the sea of people by using the same verbal tactics, taking us right to the elevator up to the VIP suites. It was like taking a taxi ride in Puerto Rico. It was comical and certianly a high point and the race hadn't even started yet. We were wisked into the VIP suite where Spencer was greeted enthusiastically by quite possibly the nicest group of people on the planet. The suite was for a Canadian company called Invensys that supplies Hendrick Motorsports with computer software that allows them to track their parts and stuff. This is their only customer involved in NASCAR. Many of their clients are huge companies, like oil rig companies and such. They were amazing and were delighted to have us there. They gave Spencer some gifts including an Invensys hat signed by both Jimmie Johnson and Jeff Gordon. Unbelievable. We'll get that one framed for Spencer. Food and drink was everywhere with an amazing view straight down on turn one where we could look out at all the drunken NASCAR fans sitting in the grandstands, all without the noise and beer an cigarette smell. It was surreal.

Fortunately the start of the race was delayed by the Notre Dame/USC football game, which allowed us to catch everything. When it started it was unbelievable. Our man, Jimmie J, had to start from the very end of the pack of cars because of an equipment change they made to the car so his odds of winning were pretty low. Not to mention that he'd won 3 straight races at this track and only two other times in modern history had any driver won 4 races straight at one track. Jimmie drove nearly to the front of the pack right away and then started having trouble with his car. He had alternator problems, battery problems, a flat tire, you name it. He went from the back, to somewhat close to the front, to the back again at least six times. At several points it was obvious that there was no way he could win the race. They would be lucky to finish anywhere in the top ten. We were listening to the in-car audio with track scanners during the race so we knew exactly what was going on at all times. It was not good. With only 40 laps to go (out of about 335) they once again dropped from the top ten by pitting for tires and fuel, however, it seemed the car was finally working well again. They were the only car to pit at that time, which was key. During the next caution they pitted, but didn't need nearly as much as the rest of the cars did so they came out in third place. It was like magic. Then Jimmie blasted in to the LEAD with only 9 laps to go. Unfortunately he made contact with one of the cars and his fender was rubbing on his tire throwing up huge billows of smoke and sparks. It was a nightmare and everyone fully expected his tire to blow, throwing him into a huge crash. Talk about being nervous. But, again like magic, the fender rub went away and he won the race. Jimmie fans everywhere went wild, including us. It could not have been more exciting, especially since we were following their crew commnications the whole time, knowing all the adverse issues they were dealing with the whole race long. We were all in disbelief. For us it was an incredibly exciting experience that we will never forget. That is something that no one can ever steal from us.

We turned our cell phones back on when we were verrrry slowly leaving the race track to find messages from home saying that the police had found our car, apparently undamaged. Also that they have several good leads on who robbed us. Their confidence is high that they will catch them. All in all, what a way to boost morale in the Caserio family. Spencer had a great time at the race, especially the hour or more that he spent with Dad (while the race was going on) outside the track at the merchandise haulers buying little tiny diecast NASCAR race cars. He was in heaven. The race ended after midnight so he was actually asleep at the end, but we woke him up for the last lap so he could see Jimmie win.

After the race we drove to our windsurfer friend, Alan White's house and slept until 10:30 the next morning. Sunday we finally got to relax and just hang out in the beautiful Fall weather. Spencer got to go eat pasta at Brixx Pizza, one of his favorite restaurants. Then he went canoeing with Dad on Lake Norman. Then we ate some more. It was good.

Now we're off to Durham on Monday for our Tuesday Dr. K appointment, but not before we pop by Hendrick Motorsports so we can thank Courtney for our incredible experience. Spencer owes here a lot of hugs. The best news of all is that Spencer is doing great. His skin is as clear as can be, he's feeling great, and we are hopefull that Dr. K will concur and let us continue with his medicine wean. More on that next update.

Just one last thing before I wrap this long update up. Thanks to everyone who's expressed their concern and sadness about what happened to us over the last couple days. That has also done wonders for our morale, knowing that there are far more friendly and caring people out there than the other kind. And after what we've gone through over the past two years, what happened to us recently really sucks and we're very sad, and it's going to take a while to recover from, but it doesn't even rank in the grand scheme of things. We have already been shown what is really important. And on that note, we are sending our thoughts and prayers to Parker and Ben and their families while they are in the hosptial again. We hope they both get out very soon. Thanks again.

Mom, Dad, and Spencer Rocket - JJ fans.

Thursday, October 13, 2005 9:54 PM CDT

Additional Update Day 528

Okay, here's a good one - today (October 14) is our aniversary. Here's what happened: About an hour before I reunited with Mom and Spencer in Raleigh in preparation for the rest of our trip, including the race, Dr. K, Orlando, and Disneyworld, I got a strange phone call. Long story short I had our friend Toni run by and check on our house. Well, it had been ransacked. They stole one of our cars, removed some stuff from the other two cars, stole all our electronics including all my editing decks for the business, the business computer, even Spencer's piggy bank was busted, which had almost $40 in it. They found two credit cards and proceeded to use them at several county businesses over the next two days. All the pictures were off the wall, all furniture was moved or dumped, even some boards were removed from the floor. Every piece of paper from all our files and records were dumped all over the house. My parents getaway house, which is on the same property, was also ransacked.

Timing was very suspicious as Kerri had just left the evening before and the first credit card was used early the next afternoon, plus a UPS package was delivered to the house. Someone knew we were gone. Did they know us? Did they know we have a child who's undergone an incredible medical experience (along with us)? How low can people go? I can't go on right now but suffice to say...well, you know. Just when we thought we were getting our lives back together. Not sure how this will affect our trip.


Day 527

Thanks to everybody who's been checking in on Spencer's CaringBridge page for the past couple years. We've recently cracked the 100,000 visitor mark. Spencer's a popular guy.

Well the Caserio family is scattered about for the next day or two as we head back to Duke for Spencer's 18 month checkup. Dad headed to Hatteras for some more filming a week ago, where it's been pretty cloudy and rainy for most of the time. Mom and Spencer left San Jose on a Corporate Angel Network flight on Wednesday and landed in Cedar Rapids, Iowa, of all places. They spent the whole day Thursday there and the next flight leaves from Illinois on Friday. The airport there is about 1 1/2 hours away by car from the airport in Iowa. Can't remember the city off hand, but it is the headquarters for John Deere, who is flying them to Raleigh.

Friday night will be spent in Raleigh where the whole family will reunite. But there is one important fun thing we'll be doing before Spencer's checkup with Dr. K on Tuesday. Saturday morning we'll head to Charlotte where we are all going to the NASCAR race that evening. We have VIP seating inside the box condo things so Spencer should be able to have a great time, and not be bothered by all the noise and Dale Jr. fans. Of course we'll be sporting our 48 gear all over the place. Thanks to the cooperative efforts of our friend Alan White and Courtney at Hendrick Marrow for bringing this all together. Spencer says he really wants to go to the race but hopefully he wont lose intersest as soon as the green flag drops. We'll try to bring some distractions for him. Should be very exciting. One thing we know Spencer is going to flip over, is all the merchandise haulers that sell driver gear outside the speedway. Pretty much every driver has their own hauler and there is a plethora of diecast race cars, which is what Spencer is going to flip over. We'll have to try to keep the expenditures down.

After the race we'll stay at Alan's house in Charlotte, hanging out on Sunday and part of Monday before we head to Duke. Alan lives right on Lake Norman and has a boat and canoes and stuff, so Spencer should be stoked. Weather forecast is great. Then it's off to Duke, then down towards Orlando to see some alligators. Spencer is doing well and we're hopeful that Dr. K sees the same so we can continue with his medicine wean. We'll have a report after the race and our Dr. K visit. Thanks again for everyone's visits to Spencer's site...and GO JIMMIE!!

Mom, Dad, and Spencer

Sunday, September 25, 2005

Day 507

Well I suppose it's high time for an update. The big news is Jimmie won the race today, hurrah!! Spencer was very excited about that...and Mom and Dad too, especially because double 'J' hadn't exactly been lighting the world on fire lately. But the bigger news is that Spencer has been doing great. He still isn't able to attend school because of a kid or two who didn't get their vaccines until after school started. He has to wait 30 days before he can be in contact with them. With our up-coming 18 month checkup at Duke scheduled for mid-October that means he wont get to go to school until November. And that's a bit sad because now he really wants to go to school. In fact, he threw a penny in a fountain a couple days ago and his wish was to be able to go to his school. He has been able to go to the after-school sessions once in a while when kid's schedules permit, where he's been meeting some new friends and having a good time.

Spencer's also been tearing up the swimming pool with Matt during their Tuesday and Thursday swim lessons. It's hard to believe the progress he's made swimming in such a short time. Barely a month ago he was scared to put his face in the water. Now he charges off wherever and whenever he wants. On Saturday at the hotel pool up by Stanford he even dove down to retrieve his torpedo at the bottom of the deep end of the pool, which was 6 1/2 feet deep. Best of all swimming seems to be by far the best exercise he can get. It tuckers him out but overall it's increasing his energy level.

Spencer and Mommy were without Daddy for the past week as Daddy went to Mexico for some filming. The report was that Spencer was a super good boy for Mommy while Daddy was gone. Gramma Marge was up for a couple days and they also got an exciting visit from Auntie Michelle last weekend, so that was a treat. But even though Spencer was good and he had fun, he also missed Daddy a lot and said that next time Daddy goes to Baja that he's coming with him. Daddy is all for it but we'll see what Mom says when that time comes. Today Dad and Spencer spent a good chunk of time washing the dust off the truck.

And Dad got home at 3 in the afternoon on Thursday, just in time to leave again two hours later for Spencer's monthly Stanford checkup. Spencer's checkup went great...all labs and chemistries look great. We also went to see Stanford's pediatric dermatologist so we could perhaps get an opinion on how Spencer's skin is doing. Spencer had a small flare-up of some rash a couple weeks ago and Dr. K wanted us to stop weaning the cyclosorine, his main immune suppressant drug, for a couple weeks until the rash cleared. It has since cleared and we are anxious to start the wean again. We're pretty ready to get Spencer off that stuff and a couple other things that go with it.

That's pretty much it. Other than being monumentally behind with both the business and around the house, with little hope of being able to dig ourselves out (which is why this update is so long in coming), things are going very well. And we are most thankful for that. Thanks for checking in.

Kerri, Brian, & Spencer

Sunday, August 28, 2005

Day 491

It's been a busy couple of weeks for Spencer Rocket, and mostly fun. Currently we are at Gramma Betty and Pappa Verne's house in Lake Tahoe where the weather has been stellar. We'll be here until Wednesday when we head to Stanford for Spencer's monthly checkup and then home.

Before we left Spencer was finishing up his summer school program in Cambria. He's had his typical 4 year-old psychological adjustments to going to school but he mostly enjoys it and is adapting to the school kid scene. He certainly seems to be learning some fun stuff there although we think the social skills is the thing he most needs and craves. He just lights up when he gets to play with other kids. Unfortunately this is possibly going to prove to be difficult for the coming school year as we think Spencer is going to start pre-school in September. We've already mentioned about our mandatory hospital visits for any fever scenario but there is another problem: Spencer must stay out of physical contact with any kid who's had any recent live vaccinations for 30 days. A week before the end of summer school a girl got her MMR vaccination which caused havoc with several days of attending school. Once pre-school is in session this will be a bigger problem. Even now Spencer must stay away from Meg until nearly mid-september. Also, the parents at the New Dawn montessori school where Spencer is going have been informed about Spencer and one kid is getting vaccinations August 30. That takes us out for the entire month of September. We're trying to play with the scheduling and such but it is a big problem. Spencer doesn't need the academic side of it but he does need the social side of it.

Beyond that, we headed for Tahoe via Yosemite for a 10 day trip before Labor Day weekend. On the way to Yosemite we stayed overnight in Fresno where we had dinner out with Parker Fritsch and his family where we were happy to be able to welcome them back from Duke in person. Parker and Conner then joined Spencer and Dad in our hotel pool for a great night swim session. And Parker is doing great by the way. Yosemite was somewhat of a struggle but it ended well with a good strenuous hike to Vernal Falls. The hike started out poorly with Spencer being pretty bratty but he improved and eventually probably hiked over half the steep 3.2 roundtrip miles himself. Certainly this was the hardest walk he's ever been on.

We then headed for Tahoe. Our second night there was when Spencer had his time of not much fun and we dodged a hospital stay bullet. The second night there (after our first full day) Spencer started throwing up around 10 pm. He threw up two more times by 1 am and then stopped, at which time he was able to keep his medicine down. Unfortunately at that time he also had a 101 degree fever, 0.5 degrees off our mandatory hospital stay point. You could imagine our alarm when at 3 am his fever was 103.6. Yikes! Why does this stuff always happen in the wee hours of the morning? We pretty much knew our trip to Tahoe was over after one day and we were heading to Stanford for who knows how long, most likely in another long and expensive ambulance ride. After the phone calls to Duke we completely packed up our stuff in preparation for leaving town. This packing delay saved us.

So then we headed of for the ER in Truckee. Miraculously his fever was down to 99.8 the first time they took it in the hospital, probably less than an hour after we recorded the hot tomato's 103.6 temperature. Seems that the official temperatures are the ones recorded in the hospital. So in the end we didn't have to stay in the hospital let alone go to Stanford. Spencer got his port accessed for labs and blood cultures, got a couple IV antibiotics and we were released before 9 AM. All we had to do is come back the following morning at 6AM for another dose of IV antibiotics as long as the fever stayed down, which it did. So, yes, we dodged a bullet, even though the whole experience destroyed us for a day because of no sleep. Spencer was tired the whole next day but he's been energetic and having fun ever since. the same can't be said for Mom, who developed intense back problems the following day. The problems became so bad she had to visit a chiropractor and nearly ended up in the ER herself Saturday morning. That ruined another two days for Mom but she has been steadily improving and feels pretty good tonight. Perhaps she'll finally get a couple fun days in now before we head to Stanford Wednesday.

When we get home Thursday night we are doing something a little bit crazy (at least Mom and Dad are) to send the summer out with a bang. For the first time ever, we will send Spencer off to stay overnight with Gramma Kristie and Grampa Ernie while Mom and Dad go play without the kid. What are we doing? We're going to Southern California to attend the NASCAR race in Fontana. Should be an experience.

Medically Spencer is doing very well. The big news is that we have finally begun to wean his main immune suppressant drug - cyclosporine. If all goes well he could be off this drug, and subsequently his blood pressure medication and one or two others in about 8 weeks. We are hoping for the best.

Thanks everyone for checking in, and now you know why we haven't updated as often. We're still on the go. I also have more great pictures I need to put up so check back soon. Oh, and good luck Louisianna and Alabama. You're going to need it.

Mom, Dad, and Spencer

Tuesday, August 9, 2005

Day 462

As you can see from the photo above Spencer did make it to the Monster Truck rally at the Paso Robles Mid-State fair. I guess that's all it takes to get a fever to go down - just mention we may miss the monster trucks...oh, all better. The hospital stay went fine. Everyone was very nice at our local hospital. Spencer must have just had some bug, kind of like last time. He was very tired and weak, but as his fever went down his energy picked up. And by the time he was released on Saturday afternoon he was raring to go.

Spencer really liked the monster trucks but even they weren't enough to overcome his short attention span. He pretty much tuned out when the motorcycles were racing, even when the freestyle guys were doing their crazy jumps. That was just insane, but Spencer was in his own world. By half way through the event he couldn't sit still any longer. He wanted to buy a little toy monster truck and then go on more rides at the fair, so we left, missing the entire second half of the show, including the finale of monster truck freestyle. Oh well.

Spencer ran into his buddy Matt at the monster truck show and they both ran off (along with Matt's cousin) to go on ride after ride after ride after ride. They went on the planes, the train, the motorcycles, the bumper boats, the roller coaster, the giant slide, you name it. I thought Spencer's face would break if he smiled any harder. The kids had about as much fun as kids can have. I'll put some photos up soon.

Now we're back at attempting a routine - summer school in the morning and swim lessons in the afternoon. Spencer is just starting to blossom in his swim lessons...really advancing quickly...but unfortunately this is the last week of swimming of the year. And next week is the last week of summer school. Just when we get into a routine, the routine ends. After that the plan is to get Spencer back up to Lake Tahoe one last time. He needs to show off his swimming skills and brush up on his golf game.

Medically Spencer is doing fantastic (although now he seems to be trying to get a runny nose). His skin looks the best it ever has and we are anxious to start weaning his cyclosporine starting next Monday. Thanks for checking in and hope everyone is enjoying the summer.

Kerri, Brian, and Spencer Rocket

Friday, August 5, 2005

Day 458

Well we're giving the ol' local hospital a try-out. Spencer woke up Friday morning with a pretty good fever - 101.1. Automatic admit for 48 to 72 hours is at 101.5. Spencer did get up to 101.3 and even ticked 101.5 on our home thermometer, but it wasn't official so nobody's saying anything. So anyway, that started the phone game - call Duke, call the pediatrician, call the local hospital (Sierra Vista). Sue at Duke said Spencer was borderline for being admitted. Spencer has actually been running a little warm ever since the day of his Stanford checkup last Monday, although it was only in the low 99s. Because of that, and because the weekend is upon us, it was decided that we'd go to Sierra Vista for at least a blood draw, cultures, and an antibiotic. But we decided that we'd eliminate any possiblity of a traumatic port access by accessing Spencer at home before we drove in. That worked out great.

In the meantime, Spencer was obviously not feeling too perky. He was pretty much just sleeping through the morning. There were no other symptoms besides that. So finally Mom and Spencer zipped off to Sierra Vista around noon. When they got there Spencer's fever was down under 101. By late evening it was down under 100. But it was decided that Spencer should spend the night in the hospital, even though the magic 48 hour admit had not been triggered. This would allow the hospital to monitor the fever overnight, and get two doses of antibiotics in him, which would cover him throughout the weekend if there was something bacterial going on with his line. The feeling is, at this point, that he has some normal kid virus or something. The plan is for Spencer and Mom to come home Saturday afternoon, assuming the fever stays down. Let's hope so.

All this could not have come at a worse time for Spencer, because he has something extremely big planned for Sunday. We're all going to the freestyle motocross and MONSTER TRUCK rally at the Mid-State Fair. He started bawling uncontrollably when I accidentally mentioned that if we got admitted for 48 hours then we'd miss the monster truck thing. When he sees the ad on TV for the show he starts screaming hysterically. Needless to say he is excited, and hopefully this fever thing will not keep him down.

So this shows us that as much as we've been trying to get back to "normal", truth is, there is no normal. And there won't be until we get his mediport removed and out from under the admit-for-fever restriction. This may not be until May 2006. It's kind of like having one hand tied behind your back. Everything we do that takes us towards normal is a conflict. Spencer has been playing with some friends and he finally started his summer school program. But after only 3 days he's got a fever and we're out of commission. Maybe he didn't catch it at school, but yesterday (Thursday) we were called because a little girl said she had a sore throat, so we had to pull him out after 10 minutes. Then the little girl stayed at school with all the other kids all day because her parents had left. Now what? Are all the other kids infected now? When will it be safe for Spencer to go back? And this is only summer. How are we going to navigate through the cold and flu season in fall and winter if he's going to school? Spencer's immune system us up and running, but he's like an infant again, trying to build up his immunity to all the typical stuff out there. He's going to get it all.

Needless to say we're a bit conflicted. We want to get on with our lives, to be able to plan ahead, to get Spencer some socialization, but it's a stone cold guarantee that he's going to catch some bugs and end up in the hospital. Everything will have to be cancelled, school stopped, work abandoned, plans cancelled, money lost - all in exchange for a the oh-so-fun stay at the hospital. That has been our mindset for the past week or so as Spencer has started playing and schooling. And sure enough, here we are. This is not doing much for our comfort level. Oh well, we're lightyears ahead of where we were last year, but it's a slow restart. We're under caution right now. Thanks for checking in and hopefully I'll have an update after the monster truck rally. And I also have a photo or two to post from Spencer's first fishing trip last weekend with his friend Tess. That was fun.

Mom, Dad, and Spencer

Friday, July 29, 2005 12:37 AM CDT

Day 450

(All new photos of our trip in the photo album!)

We are finally home from our 3 week trip to Oregon. We were gone kind of a long time, which we were a little nervous about at times since we were pretty far from our local hospital, but Spencer had a blast and we pulled it off. Our trip started with Spencer's checkup at Stanford. From there we stayed in a caboose in Dunsmiur, then on up to Bend, OR for the summer festival. Then we hit Hood River where Daddy finally got to do some filming, which was why we went to Oregon in the first place. The wind was good and the action was hot for the 5 days of filming. While Dad was filming Spencer and Mom swam, played, and ate. One time they picked over 12 pounds of blueberries.

On the way out of Hood River we stopped at the Mount Hood Ski Bowl, where they have a super fun variety of outdoor fun. They have go-carts, kiddie go carts, bungee jumping, a euro bungee, a zip line, mountain biking, and tons of other kids games. But most of all they have an alpine slide, which is like a bobsled run on wheels. You take the chairlift up the mountain and blast down through the winding course on little rocket sleds. It was amazingly fun. It seems a little dangerous but I guess not as those sleds seem to stick on the track. Spencer ate it up. Who needs Disneyland when you can just use gravity?

Then we stopped by Sun River on the way back south for some swimming, bike riding, river floating, pony riding, golfing, etc. This one was all for Spencer and he had a great time. Then we extended the trip even longer by stopping in on Gramma Betty and Papa Verne in Lake Tahoe. This time the weather was beautiful, which made Mommy very happy. Spencer played lots of golf. Betty and Verne got him some clubs last time he was in Tahoe and Spencer actually really likes it. Funny because Mom and Dad have essentially never played golf in their lives.

Finally, we took the long way home through Yosemite (where we did not see any bears, much to Spencer's dismay) and finally got home at 2:30 in the morning on Tuesday. It was a long and exhausting trip but we accomplished our goal of getting Spencer to have a lot of fun. We knew we were successful when Spencer refused to get out of the pool in Tahoe to go home. He said he didn't want to go home, which is unusual. But he is happy to be here now. Mommy is not too happy because it's foggy all morning, but it's good to get Spencer out of the sunny hot weather (there is a down side to that).

We've got some stuff planned for him at home in August. Today he went to school for the first time, which he was very excited about. It's actually just a summer program and is mostly playing, but it's at the little Montessori school. We're supposed to go see a movie this afternoon too. On Saturday Dad and Spencer are going fishing with Tess and her dad Eric. Next week he has school and swimming lessons. So he should be busy.

Medically, despite slathering Spencer with sunscreen as often as possible and dressing him in long sleeves and long pants nearly the entire time (even though it was 90 to 100 degrees the whole time), his face, neck, and hands have had some gvh reaction to the sun. We have been going heavy on the steroidal creams in the past couple days and it does seem to be clearing up nicely, kind of scary though. We really have to be careful, especially in the summer. Other than that he's doing great. Monday is his next appointment at Stanford.

And some great news we can report is that Parker is heading home to California already from his transplant at Duke. I'm sure they can't wait to get out of that humid heat. Although Fresno isn't exactly much of a cool-off in the summer.

Thanks for checking in and hope everyone is having a good summmer.

Brian, Kerri, and Spencer Rocket

Monday, July 18, 2005

Day 438

Sorry it's been so long since our last update. But then again I guess that's a good sign that things are going well! Plus it's summertime, the days are long, and we've been on the go. First for the medical news... We went to Stanford on July 6th for Spencer's checkup, IVIG and pentamadine. His labs are great - chemistries are all normal, even his hemoglobin, which has been down in the 9.5 range for the last couple of months has come up to almost normal. His skin looks good other than some eczema that comes and goes on his face and neck. It's interesting that it's confined to the areas where we apply sunscreen everyday. We are wondering if the sunscreen could be irritating his skin, since he has a history of sensitive skin and has had rashes from some other things like Tagaderm and the adhesive removers we used when he had an external catheter. I'm going to look into some natural sunscreens and possibly contact an alternative medicine specialist for some ideas. It seems like overkill to continually use a steroid cream like Elocon or Protopic on eczema because of all the side effects. But other than the eczema Spencer looks and feels great. His energy level and endurance continue to improve and he's getting more opportunities to play with other kids lately.

After our appointment at Stanford we headed north to Oregon for a working vacation. Spencer and mommy are doing the vacation part and Brian is taking care of the work part! We've been doing lots of swimming, bike riding, eating and even a little shopping while Brian has been busy filming windsurfing in Hood River. Although it's possible he's snuck in a little time on the water while we weren't looking :)

We spent the first night sleeping in a caboose in Dunsmuir near Mt. Shasta. Spencer had the greatest time there - he told us he didn't want to leave, that he was was "going to stay for twenty years." It was pretty cool! (Thanks to Jeanine, Zack's mom for telling us about it). After the night in the caboose we stopped in Sunriver for some bike riding and then headed to Bend for four days for some good food, a craft show and more bike riding. We have been in Hood River since last Monday and the weather has been incredible. We have had lots of pool time and some great visits to the park. There are so many families with young children here and everything is kid friendly. And they have some fantastic food here too and lots of great fresh fruit. Spencer and I picked 12 pounds of blueberries a couple of days ago!

We've spent the last couple of nights with our friends Jonny and Adrienne, their two girls and six month old baby. Spencer is having a blast playing with Samantha and Claire. Monday we will start heading south, but I think we'll take our time...maybe another visit to Sunriver or Bend for some bike riding? And then back to Cambria in time to start some swimming lessons and hopefully a few sessions in the summer program at the Montessori school for Spencer.

This has been a bittersweet trip in some ways. One of the last things we did before Spencer was diagnosed was go on a trip to Sunriver, Bend and Hood River. We have ridden our bikes on the same paths, eaten in many of the same restaurants, swam in the same pool, seen some of the same people we saw at this time two years ago. In some ways it's like coming full circle and we can't help but think about how much all of our lives have changed. We have certainly lost our naivete and that blissful sense of security we used to have. We are still struggling to try to figure out how to rejoin the normal world again. We are close, but for sure what we have been through the last two years has left some scars. It's hard to know where we fit in anymore.

I talked to my friend Pat a few days ago. Her son Isaiah is about a year and a half ahead of us on the transplant journey. It was interesting to talk with Pat about some of the feelings we are both dealing with post-transplant. It's a complex mix of happiness, euphoria, guilt, shell shock, reflection - I don't quite know how to describe it, but frequently I feel like I'm paralyzed with inertia. I don't seem to be able to get going these days. Is this what post-traumatic stress is like? What the medical community has been able to accomplish in the last few years is absolutely amazing. Spencer has been given a second chance at life. Brian and I have been given the gift of seeing Spencer grow up. We are getting the chance to be a family. The medical part has come so far, but as parents and as a family we are left to figure out how to heal our emotional wounds and move forward on our own.

We still worry, (although we try to pretend we don't.) It doesn't take much to bring it all out. Spencer has been on the sidelines for so long it feels weird to be around kids and people again. And we know that his immune system isn't back to normal yet. A little fever or any of the common childhood illnesses are still a big deal for him and will land him inpatient. Emotionally it's a weird place to be - half euphoria and high fives - Spencer IS doing great. But we still worry about everything he touches in public, anyone that coughs or sneezes or looks a little off....It sure makes it hard to just relax and feel normal. And yet we know how incredibly lucky we are to be able to experience these emotions. We have met many families who have lost their child or are dealing with frightening complications that would give everything to be where we're at.

Thank you to everyone that has continued to check in on Spencer and send good wishes and prayers his way. We really appreciate it! Please continue to send good wishes and prayers for our friend Ben and his family and for Spencer's friend Parker who also had a CBT at Duke and is going to be returning to California in a few weeks.

Love,
Kerri, Brian and Spencer Rocket

July 4

Put a 4th of July photo collage in the photo album. How's that for fast!

Back to the July 2 update:

Day 422

Spencer and Mom got back from Lake Tahoe about 4 days ago now. They had fun up there with Gramma Betty and Papa Verne but the trip was interrupted twice by trips to Stanford, once for a couple days for a checkup, and once for the 3 day unplanned visit. Additionally, the weather never really got nice and warm, which put a big damper on the pool time. We thought Spencer would grow gills being in the water so much, but it didn't work out that way. He ended up playing quite a bit of golf with Betty and Verne. He also made three trips to Squaw Valley to go on the Euro Bungie, kind of a fun bungie/trampoline type contraption. Kids love it. By the end Spencer was able to do some flips by himself.

Spencer also missed out on the camp activities up there, partly because of the fever/Stanford thing, and partly because the camp started so late in the trip. So overall, not the level of activity we anticipated, but fun nonetheless. Not to mention Spencer really missed Daddy.

Now Spencer is home, but not for long. Daddy still has lots of work to do so Grampa Fred is up helping out until the 4th. Today we all went into San Luis Obispo to take Spencer to his first ever movie in a theater. With the NASCAR theme and all Spencer was very excited to go see Herbie Fully Loaded. And he ate it up. During the race scenes he'd laugh and blurt out all the cars he recognized - there's Tony Stewart, there's Mark Martin, there's Jeff Gordon. He thought that was a kick. The kid knows way too much about NASCAR. Hard to believe it was the first time we were able to take him in a theater (and man, have you seen what they charge for popcorn in those places?)

So the plan now is to go for our checkup at Stanford on Wednesday of next week, then head up to Oregon so Dad can film around Hood River for a few days. Of course Mommy has to stop in Bend to take in the Summer Festival first, but it should be nice. (So Brandt and Shannon, we'll try to blast over to Portland to see you guys one day while we're there.) We will be gone a couple weeks. Once we get back Spencer is scheduled to start a little afternoon summerschool thing here in Cambria. Hopefully we can keep that on track because he so likes to play with kids his own age, but rarely has the opportunity. Can't say we aren't a little nervous after the fever he got in Tahoe and subsequent mandatory hospital stay. It's a pretty big deal. And we'll be under those guidelines for almost another year, so all plans are subject to immediate change. But we do everything in our power to stay on track.

Medically Spencer is back up to speed. He seemed a bit low on energy for several days after his hospital visit but he's going strong now. Dry skin and a few small rashy spots is what we're dealing with most often. He's taking his meds like a champ and doing his best to be a normal 4 year-old. Thanks for checking in and hope everyone has a fun 4th of July.

Mom, Dad, and Spencer

Saturday, June 18, 2005 3:23 AM CDT

Day 408

Yes, Spencer was finally sprung, but it took a bit longer than anticipated. We were told that the discharge orders were going to be written the night before so we could be out pretty early in the morning...not! We didn't get released until 1:30 in the afternoon. We just sat around all packed up until then. The concern was Friday traffic trying to get out of the Bay Area and back up to Tahoe. Also, we had promised Spencer that we would go up to the place just off the 101 where they have bumper boats and mini golf. We were pretty much hosed with the traffic by that time so we went to the golf place for 4 hours and Spencer had a great time. And traffic was light all the way to Tahoe when we finally left around 6:30.

So Spencer, Mom, and Dad are back in Tahoe. Dad decided to drive them all the way back and fly home on Saturday so he can get back to work. The weather is still cool but it's supposed to slowly warm over the next couple days so the outside fun can start up again. We're just guessing the whole hospital thing was just some sort of short stomach virus or something, and that it's over now. It was actually a very pleasant visit to Stanford, the late discharge being the only hiccup, and all the doctors and nurses were super great and happy to see Spencer. Many of them from 2 North had not seen Spencer for over year. They were flabbergasted by how good he looked and how much he has grown. That was great and very rewarding for all. For once Spencer was the easy patient. We also got some nice visits from Marey and Ali, the Doane's, and Cathy, and Marylin. It was great to see everyone again, but let's not do it again sometime, if you know what I mean.

Thanks for checking in. Time for bed.

Mom, Dad, and Spencer

Thursday, June 16, 2005 12:40 AM CDT

Day 407

Just a quick update from Stanford. Dad has shown up now so the whole family is together, along with Gramma Kristie who came up to help. Spencer is doing very well. He hasn't had a fever since he's been admitted and he is starting to eat pretty well. He needs no fever for 48 hours and to be eating and drinking well before we get discharged. No cultures have come back positive yet. We were hoping to get discharged today (Thursday) but we just received word from Duke that they want us to stay 72 hours, so now we're hopefull of release on Friday.

So things are going well. Certainly a large disruption to the flow, fun in Tahoe, and Dad's work plans, but looks like we can get back on track soon. Thanks so much for checking in and signing Spencer's guestbook.

Dad, Mom, and Spencer Rocket

Tuesday, June 14, 2005

Day 405 - Update to the update: I guess the trick is not to update. No sooner did Kerri write this update than Spencer started puking on Monday evening. He could not keep his medicine down so Mom had to take him to the ER in Truckee. They gave him his stress shot of hydrocortisone and were about to leave when Spencer spiked a 102 degree fever. That is an automatic admit so they accessed his port and started antibiotics. Then they arranged transportation to Stanford. Mom and Spencer arrived at Stanford Tuesday morning around 9 or 10. So a bit of a kink in the summer Tahoe plans but at this point it's hopeful that it is just some small bug of some sort. Spencer has not thrown up since last night and his fever is down to 99. We're hoping for the minimum 48 hour stay and get back to the fun. We have been so fortunate to avoid this scenario for over a year, but how can a 3-4-5 year old kid go for a couple years without ever getting a fever? Getting thrown back into the hospital mode of things is a cold slap in the face. Thanks to the ER staff at Truckee for being so great. Hopefully we're out of here soon.



Day 404

Sorry for the long time without an update. This may be new record for us! But the good news is things are becoming a little more mundane in the Rocket family...

Spencer and mommy are spending the month in Tahoe visiting Grandma Betty and Papa Verne, a.k.a. Popcorn or Chief Popcorn! We have been having a great time. We all got to attend the kickoff pasta party for the TNT Centurion at Lake Tahoe with Andrew's family. His dad, Doug rode this year for the second time. We also got to see Ali's family. Ali's mom Marey and sister Lexie rode in honor of 100 people with blood cancers they have met through friends, CaringBridge and the ALL Kids List. Daddy Rocket is home working frantically to edit some video footage, trying to maximize his productivity in the relative peace of our absence :)

After the event Andrew's family visited with us for a couple days. Unfortunately, the weather wasn't too cooperative. It was cold and raining so we couldn't get out to play in the pool or do much. It was still great to finally meet the Sprague family in person. Andrew's mom Kim has been a huge support for us while coping with Spencer's transplant.

The weather is finally warm again and we have been able to get out and enjoy the pool and some informal golf lessons for Spencer. Grandma Betty says he can hit the ball pretty well. But I doubt Tiger is getting nervous yet! On Saturday, we went to Squaw Valley for an outing and Spencer, Popcorn and mommy went on a bungee jumping trampoline contraption. Popcorn went sky high. Spencer showed great endurance. And mommy got really sore! Last night we went to a fun BBQ. Spencer cleaned up all the balls on the putting green with one of those hand held golf ball vacuum thingys. We had a nice dinner and then sat around the fire wrapped up in cozy Pendleton blankets. That's when Popcorn earned his new moniker - Chief Popcorn!

On the medical front, Spencer continues to do great. We drove down to Stanford for a check up last Thursday and his labs are great. He did his inhaled pentamadine and IVIG like a champ. Accessing his port which was once so stressful, is now no big deal. His blood pressure was back up a bit after finally dropping the BP med two weeks ago, so he is back on amlodipine for now. We'll get it checked in a week or so and hopefully try to wean it again soon, although he will likely stay on it until we start weaning the cyclosporine (immune suppressant drug to prevent GVHD) in early August.

His skin is looking good for the most part. He does have some folliculitis on his face and neck, which is related to taking cyclosporine, not GVHD. Our biggest battle these days is putting on sunscreen - an absolute necessity after the radiation treatment he has had, and putting on the various creams needed to treat the folliculitis and dry skin issues he has. His lips are blistered and peeling, but you would think that chapstick is some kind of horrific torture to see the battles going on around here lately! I've even tried several of the the sweet smelling fruity ones. I guess I should just be grateful that our battles are of the non-life threatening variety these days. Like I mentioned in the beginning - our life is getting more mundane these days!

Please continue to send good wishes and prayers for our friend Ben, who is awaiting word on his most recent BMA, and Parker who is at Duke recovering from his cord blood transplant and Jared who has been making a great recovery from the major complications he had last January from an infection.

Thanks so much to everyone that is participating in the TNT events and helping raise money so that someday there will be a cure or a way to prevent blood cancers so kids won't have to go through this any more. Once again thank you to everyone that supported Team Spencer's Rockets in our fundraising efforts for the Family Support Program for the Pediatric Blood and Stem Cell Transplant Program at Duke. I am still trying to get thank you notes out - hopefully next week if I can get Spencer signed up for some summer activities here for a few hours a week.

Thank you everyone for your continued prayers and support. You have all been a big part of helping us get through the past 22 months! Please sign the guest book to let us know you visited. Spencer loves reading them!

And on a sad note, please send your prayers to Robin, Shannon and Ian. Ian was released from being inpatient at Duke on the same day that Spencer was last year. After severe complications and over a year of praying for a miracle Ian passed away recently. Their road was as rough as it gets and we hope that they can somehow find peace.

Love,
Kerri, Brian and Spencer Rocket

Saturday, May 28, 2005 2:24 AM CDT

Day 387

Long time, no update. Sorry about that, but whereas we only had one heavy and enormous thing on our plate at this time last year, we now have a more normal workload of a million little things on our plate. Spencer had a good time out at the Outer Banks of North Carolina the last few days of the trip. With Dad's filming job we got a 6 bedroom house right on the ocean that was super comfortable, although it shook around in a measly 20 knot breeze. Can't imagine what it'd be like in a small hurricane, which are known to blow through from time to time, like four or five per year sometimes. Spencer liked to roam around the beach and collect shells, but the most fun thing was getting to drive on the beach in the 4x4 rental car. He thought that was a kick. We saw a couple guys catch little tiny sharks out on the point. The last day we drove to Nags Head and rode little NASCAR theme'd go-carts and bumper cars. Needless to say Spencer was into that. Then we hit the North Carolina Aquarium in Manteo before heading back to Raleigh.

Mom and Spencer returned to California on a nice Corporate Angel Network flight, right into San Luis Obispo, a week and a half ago, but Dad stayed in North Carolina an extra 9 days to do some filming in Cape Hatteras. It's the first time the family has been separated for more than a couple days for nearly two years. The only other time was when Alan White took Dad out to Cape Hatteras for two days last October.

Mom and Spencer got along just fine with out Dad around, or so they said. One funny thing that happened at the end of the trip was that Spencer suddenly switched from liquid medicine to taking pills. We kept telling Spencer how Parker took all his medicine in pill form and what a big boy he was because of that. Apparently Spencer decided he could be like Parker too and overnight he just insisted on pills and that was that. It makes it a bit easier on the medicine-giver not to have to crush all the pills up and mix it with cherry syrup. Spencer's a big boy now too. And he took all his medicines like a champ while Dad was gone. When he wasn't taking medicine Spencer was busy swimming, going to the beach with Tess, visiting Gramma Marge and Grampa Fred, eating Gramma Kristie's crab cakes and hassling Grampa Ernie, among other fun things.

The theme this summer is for Spencer to have fun, non-stop, perhaps to make up for last summer and more. After the holiday weekend Spencer and Mom are headed up to Gramma Betty and Papa Verne's house in Lake Tahoe for the entire month of June. Dad will make a short visit or two up there but will have his hands full editing all the video from Cape Hatteras before the end of the month. In Tahoe Spencer is sure to grow gills from all the pool time he'll be logging. And Mom will be helping around the house while Gramma Betty continues to nurse her broken arm back to health. Word has it the weather's been beautiful up there already. The fog is starting to set in around Cambria lately.

The first weekend in Tahoe will be the 100 mile bike ride that the Team in Training participates in. Spencer and Mom will finally get to meet and play with Andrew and his Mom Kim. Funny how you can get to be best friends with someone through these tough times, especially with the internet, but never have met in person. Should be fun. And on either end of the trip will be the monthly visits to Stanford. Should be not quite as fun.

Thanks so much for checking in, and I'll try to keep the updates coming in June even though the family will be scattered about a bit. And please send good wishes to our friend Ben Murphy, who has relapsed again after his second transplant and is now pursuing some more radical new treatment ideas.

Mom, Dad, & Spencer Rocket

Saturday May 14, 2005

Interim update - May 14: We had fun at the coast but Mom and Spencer were able to arrange a great Corporate Angel Network flight right out of Raleigh into San Luis Obispo on Sunday. They couldn't turn it down even though it cut their Hatteras trip short. Check out this link, an article on Spencer, Olivia, and Corporate Angel Network that ran in
Durham's Herald Sun newspaper on Saturday. There's also a photo of Spencer with the Duke Energy jet on their home page, but it'll be gone soon. Dad is staying on in Hatteras for some film work for the next week. It'll be the first time since diagnosis that Dad get's back to film work while Mom takes care of everything else. Slowly working our way back to the real world.

I also forgot to mention a nice long visit that we got to have with Pat, Isaiah's mom during the RoH walk, who was so helpful to us through this whole transplant experience. That was great. Isaiah is 2 1/2 years post-transplant now. Back to the previous update:


Day 370

(New photos of the walk in the photo album)

Whew! Where to start? I'm sure I'll leave something out. Saturday was the Rainbow of Heroes walk and it was just a fantastic day. The weather was perfect. We saw all our old friends. Spencer played up a storm. The walk was a huge success. And we won a prize. Can't get much better than that. The walk was 13 laps around this little track, of which Spencer walked 3 or 4, Mom carried him 2, and Dad carried him the rest of the way. Not bad, but after a couple of laps with Spencer on your shoulders it sure doesn't seem like he's lost weight over the past few months, but he has. After the walk there was a ceremony where they announced that everyone had raised over $126,000.00 for the Family Support Program. They were hopeful to raise $100,000 so everyone was very happy. Team Spencer's Rockets took third place in the fundraising with just over $10,000. Thanks so much to everyone who help us reach this amount. Included in that total was the funds raised during the Lahontan golf tournament in Lake Tahoe this past summer. Spencer won an iPod mini for third place, and Mom got a nice watercolor print of Duke Chapel. Pretty cool prizes, and totally unexpected.

At the end of the ceremony everyone released balloons into the air, each with a child's name on it that had gone through transplant. We felt a bit bad releasing all that rubber into the air but it was a very powerful and emotional moment. There was also a hero wall with a bunch of photos of transplant kids, a barbeque, a band, a raffle, and tons of stuff for the kids to do. It was a great time.

Sunday was an off day for us so we took Spencer down to Pullen Park in Raleigh for Mother's Day. We rode the pedal boats and the train. And Spencer had a good time just cruising around, mingling with all the other kids. We were a bit freaked by all the people but it was outside.

Monday was testing day. Spencer was a champ for his port access. He seems to be completely comfortable with it now - no longer an issue. He had all his bloodwork drawn - 15 tubes I think, then the echocardiagram, pulmonary function test, chest x-ray, and CT scan. The day was a bit hectic trying to keep everything on schedule but overall it went off without a hitch. Afterwords we went to the Life & Science museum to check out the rockets, bugs, and butterflies. And then we went to the park with the Fritsch's so Spencer, Connor, and Parker could play. Again the weather was just ideal.

And finally, Tuesday was our Dr. K day where we discussed any test results that were back already, how Spencer is doing overall, and what lies ahead. Spencer also got his monthly I.V.I.G. and Pentamadine in the day hospital.

So how is Spencer doing? He's doing great. He passed his tests with flying colors and his labwork continues to look good. However, we did not get the okay to start weaning medications quite yet, which apparently didn't surprise Mom. Dad, however, was a bit let down. In fact, Spencer's magnesium was low so we picked up an additional medication. Not a big deal, though. But we do have a weaning schedule - thing is it doesn't start for three months. Spencer will continue on his big immune-suppressant drug, cyclosporine, for another three months, before starting an 8 week wean. After that, the acyclovir and voriconazole could possibly be discontinued as well. His adrenal gland is not functioning properly again yet (due to the prolonged steroid use) so he will have to continue with the hydrocortisone, probably for at least another year. That was expected. And our next visit with Dr. K will be in late October or early November, when we though we might be getting Spencer's mediport taken out. That too, may be postponed. The reasoning is that it might be a good idea to leave it in through next year's cold and flu season just in case.

We are going down to once-a-month lab draws, so no more home port accesses. We will continue to go to Stanford monthly for the next 6 months for IVIG, Pentamadine, and labs. After our next Duke visit it should go down to every two months. At the 2 year mark it should go down to every three months. So, overall, still lots to keep doing even though Spencer is doing great. Dr. K is very conservative but she is also very happy with Spencer. He's happy, healthy, energetic, learning, developing, and growing - everything she wants to see.

Now we are headed out to Cape Hatteras for a few days. Maybe we can get some rest. Thanks for checking in.

Kerri, Brian, & Spencer

And today our friend Victor had his transplant. Please wish them well.

Friday, May 6, 2005 0:21 AM CDT

Day 365 (but you knew that)

(new photo collage of Spencer's visit to the Hendrick shop in the photo album)

Thanks so much to everyone who has wished Spencer a happy 1st re-birthday. Sure it's an arbitrary number but we've been counting down (or up) the days to this milestone for what seems to be 10 years, not just one. It's very exciting.

So we are in North Carolina. Our trip out here was the opposite of our Corporate Angel Flights of last time. We got on the red-eye out of San Luis Obispo on Monday night. This would certainly be an easier way to travel with a 4 year-old, just have him sleep the whole way here. And there would certainly be less passenger and Spencer movement at night which would be better for keeping Spencer safe from germs. Well the whole thing unravelled pretty quickly. The plane was pretty late taking off from San Luis Obispo so we missed our connection to Raleigh in Las Vegas - begin nightmare.

We were assured someone would be informed of our plight in Vegas and would meet us at the gate...not! With the maximum amount of carry-on luggage, a huge carseat, and an asleep kid, we had to walk what seemed like 1/2 a mile down to the check-in counter for America West. They did book us on another flight with American Airlines, which was another 100 yards away. We would have to take two more planes, one leaving at 1 AM to Dallas, then 5 AM to Raleigh. That took forever to resolve so then there wasn't much time to catch the flight. We had to go through the airline safety inspection again and unbeknownst to us (They could have warned us) we got marked with the SSSS tag which meant we got the full terrorist suspect search. The TSA guys said it was the airline's choice to put us through that but we think it is standard procedure when you miss a flight and have to switch carriers. Poor Mommy had not flown commercially since before 9/11 and she just about blew a fuse. By the time we got out of there we thought we might miss the flight, but fortunately not only was the plane a bit late but we had confused the boarding time with the departure time, so we made it fine.

That second leg was like putting someone who had been hanging out in the Niles Crane sensory deprivation chamber for the last year into the pits of germ hell. The plane was chock-full, every last seat, the plane was grimy and rattly from heavy use and abuse, and honestly every third person was hacking like they had the plague. We were so tired we could hardly think but Mom and Dad were both wide-eyed going, "this can't be happening". If we come out of this without getting some nasty bug it'll be a miracle.

Once we got to Dallas we had to go another mile to get to the next gate, but we found the coolest and funniest grampa guy to drive us over there on his handicapped golf cart transport thing. It was a pretty fun ride as he poked fun at everyone, chatted up all the ladies, and hooted for people to get out of the way. Both the Vegas and Dallas airports were quite crowded. Thankfully, the last flight to Raleigh was very uncrowded and smooth as butter on a nice clean aircraft. We finally got in at 9:30 AM only 3 hours later than scheduled, albeit with no sleep. Whew, we couldn't get out of the airport fast enough. Going into this we had never had a mask on Specner for more than about 45 minutes at a time and we were wondering how we were possibly going to keep a mask on him during a 3 or 4 hour flight, not counting airport time. Well, wonderkid that he is he kept that mask on non-stop for 13 hours. Unbelievable. We had a small ritual outside the airport as Spencer was allowed to rip it off and throw it in the trash can.

Gluttons for punishment that we are we then proceded, after a bite to eat and such, to drive to Charlotte to meet up with Courtney from Hendrick Marrow to check out some more race cars. That was really fantastic, as was the weather. Courtney (and everyone at Hendrick) gave Spencer the royal treatment. Thanks so much to all those guys. Then we found out that Jeff Gordon and most of the other NASCAR guys were testing at Lowe's Motor Speedway that day, which was pretty cool as they are only allowed a total of 7 test sessions per year total, at all tracks combined. So it was essentially the only test at Lowe's for the year. We headed over there and saw cars loud cars going very very very very fast. Admission was free and it was pretty cool. We saw maybe 20 of the cup cars there, like Earnhardt Jr, Michael Waltrip, Mark Martin, Jeremy Mayfield, Casey Mears, Jeff Gordon, Kevin Harvick, Joe Neimecheck, Dale Jarrett, you name it. And we got to see Casey Mears blow his engine, or hear it I should say. Spencer wasn't too keen on the noise. It was damagingly loud.

After that we met up with our friend Alan White for dinner, and then drove to Asheville. Can you say pooped out? That was a long 48 hours. We've been in Asheville ever since just hanging, relaxing, and enjoying ourselves. Spencer has been having a great time swimming and playing minigolf. Mommy hit the spa. We were supposed to be here with Gramma Betty and Papa Verne but since Betty broke her arm they had to cancel. We emailed her a cameraphone picture of Spencer to rub it in. Thanks Betty and Papa, wish you were here.

Tomorrow (Friday) we'll head to Durham and do the Rainbow of Heroes walk on Saturday morning. We'll be able to see lots of our friends from the hospital. And we should be walking with Georgia and possibly Vanessa, the office ladies from our old apartment complex Alexan Farms (more of Spencer's girlfriends) and with the Fritsch's, who are in the throwes of clinic days after their inpatient transplant time. They're counting up to day 365. Checkups will be Monday and Tuesday (Dr. K day). I'll update again after the walk.

Thanks again for checking in.

Mom, Dad, and Spencer

Thursday, May 5, 2005 from Asheville, North Carolina

• DAY 365 •

Tuesday, April 26, 2005 3:10 AM CDT

Day 355

Yeah, yeah, no update for a while. No news is good news. But now we've got all new photos, new update...the works. We figure the pictures in the album will tell the story best as to what Spencer's been up to, which is mostly just having a good time being a kid.

Let's get the medical news out of the way first, though. Medical news is - no news (see second sentence above). We did do one port access since being back from Stanford. And what a port access it was. Unbelievable. If Spencer was any more cooperative he'd have stuck his port himself. His lab numbers are still looking good, hemoglobin in the high 9's, platelets in the low 200's, chemistries mostly all in line. His skin is pretty clear too, so we're hopefull for some medication weaning after our Dr. K visit.

Speaking of that, we are headed to Duke for Spencer's one year checkup, hopefully no later than Monday May 2nd. We don't have a flight schedule yet, but Corporate Angel Network is searching and we're prepared to make backup plans for a commercial flight. Some of our plans have taken an unfortunate twist lately though. For quite a while now we have been planing on spending 3 days in Asheville with Gramma Betty and Papa Verne before heading to Durham for the Rainbow of Heroes walk and our checkup. Unfortunately Gramma Betty broke her arm a few days ago and will likely be miserable if she attempts to travel...more miserable I should say. We hope she gets better soon. We took some enchiladas over to her house the other day for some payback.

Speaking of the Rainbow of Heroes walk - thanks to everyone who has contributed to team Spencer's Rockets. The walk benefits the Duke Pediatric Transplant Family Support Program. If you haven't donated to this great cause and would still like to, there are only two more days left to contribute online at www.rainbowofheroeswalk.org. Donations can only be taken online through Wednesday, April 27th.

General Spencer news is all about hanging out having fun. Spencer and Dad have started a little vegetable garden on the deck. There was some swimming going on back during Easter week. Spencer had a fantastic time with Gramma Marge and Grampa Fred when they were up earlier in April. He would get up in the morning and say, "I'm going over to Grampa Fred's house." And he'd be gone most the rest of the day, helping out over there (their vacation house is about 100 feet away down the driveway.) That was very nice for Mom and Dad. Spencer also has a temporary job taking out the trash for Gramma Kristie and Grampa Ernie, but reports are that the kid is somewhat unreliable. A really fun thing for Spencer was when Captain Mike from the Cambria Fire Department invited him down for a fire and rescue training session last Wednesday night. Spencer was very professional and serious and helped put the fire out (or so he thinks). Thanks Mike! Check the photo album out for some action shots of Spencer and the firemen. They were all very happy to see Spencer training with them. And this past weekend Auntie Michelle came down for a quick visit for a Spencer fix. Spencer was a bit shocked she left so soon. Other than that, just a lot of playing with Mom and Dad.

Lastly, happily both Jared and Parker continue to make good progress. Parker is looking to be discharged from unit 5200 at any minute. He's done a fantastic job while inpatient for his transplant and it's fun to read their updates. Please keep those positive thoughts flowing for those two. Spencer's next update will be just before we go to, or shortly after arrival in, North Carolina. Thanks for checking in.

Mom, Dad, and Spencer Rocket

Sunday, April 10, 2005 1:58 AM CDT

Day 339

Spencer's Stanford visit went extremely well, particularly if you ignore the fact that that hospital is now bursting at the seams. They've got much need construction going on, but things are pretty much of a mess. Kids are waiting weeks for a bed for their inpatient chemo now. And several clinics are combined temporarily so it's like a flippin' ant farm in there. We're pretty fearful of cooties when we go in there, but we are glad we are only going for once a month day-hospital visits. Next month we'll be at Duke so no Stanford for two months.

Spencer's blood counts and chemistries are looking good. Hemoglobin has come up to 10, platelets at 231. Good good good. Now we're home for the rest of the month of April. Hopefully Spencer can get a little routine going (yeah right!). We'll have to get our transportation to North Carolina figured out here pretty soon. Spencer's got some swimming lessons planned for April, and maybe some afternoon activities with a few other kids. We'll see. He really thrives on interaction with other kids and he needs lots more of it. He's been deprived for so long. Today he played up a storm with cousin George and then with Tess after that. He had a great time.

Some bad news is that Spencer got kicked out of both Physical Therapy and Occupational Therapy for various reasons. The OT place, which is run by Easter Seals, is shutting down, but we may be able to work some private sessions out that won't be covered by insurance. And PT just couldn't fit him anymore. We probably eclipse the stuff he did in PT just because we keep him very active, but he is quite a bit behind in some of the OT departments.

Our ski trip ended on a great note - with Spencer just ripping the mountain apart. I guess he learned some stuff by watching the racers come down the mountain because they were having the US Alpine Skiing Championships while we were there. They zoomed into the finish line just off to the side of the bunny hill. You could watch them come down from the chair lift. So Spencer started shredding some turns of his own, even cruising through the kiddy race course with no problem. And the snow was pretty slow on our last day so Spencer did a run by himself - no teather or anything. He was pretty pumped. He runs around saying it was his best ski day ever...which it was. Now he'll have to wait until next year.

Finally, we haven't had a Spencerism for quite some time. Here's a conversation he had with another 4 year-old kid the other day while he was playing in the park:

Spencer: Are you sick? (a pretty standard precautionary question these days.)
Other Kid: No.
Spencer: I was in the hospital. I had bumps, but I'm all better now. (bumps refer to his swollen lymph nodes at diagnosis)
Other Kid: Are your bumps going to come back?
Spencer: No, I had a bone marrow transplant.
Other Kid: You want to be my friend?
Spencer: Okay.
And off they went to play.

Thanks for checking in and please keep pulling for Jared and Parker!

Mom, Dad, and Spencer

PS, please see a previous update for news about the Rainbow of Heroes Walk that we will be doing on May 7th at Duke to benefit the Duke Transplant Family Support Program. We are trying to raise funds through Spencer's team, Spencer's Rockets. Hopefully we can be one of the top teams. Thanks so much for several great donations already, a couple inparticular from our windsurfing friends Warren and Debbie Thomas from Santa Barbara, and Bruce Cunard from Maryland. Go Spencer's Rockets! You can donate two ways: directly and securely online at www.rainbowofheroeswalk.org (be sure to select team Spencer's Rockets), or you can send us (or Duke) a check before we head to North Carolina. Checks should be made out to Duke PBMT-05RH  and the our address is P.O. Box 272, Cambria, CA 93428.

Tuesday, April 5, 2005 2:57 AM CDT

Day 334

Just a quick update. Updates lately have been going clinic visit to clinic visit, but now we are down to just once a month clinic and twice a month labs, so consequently I am updating less frequently. And no news is good news.

Speaking of clinic days, our next one is on Thursday morning at Stanford. And as a testament to getting back to true Caserio form, we made a last-minute, weather provoked decision to head to the mountains one last time, again doing a huge loop from home to Mammoth Mountain (for 3 days) to Stanford and home again. Early this week was our last opportunity to hit the slopes for the year. It was looking like we weren't going to go as it looked like poopy cold and windy weather, but at the last hour they predicted a bigger storm so we went. Sure enough there was foot and a half of fresh powder all over the mountain on Monday morning with glorious clear skies by 10 AM, with little or no crowd. Unbelievable. We have to get lucky sometime, right?

But the best part was taking Spencer out for a few runs in the afternoon. The kid has suddenly just kicked it into another gear as far as his skiing ability goes. We don't know where it came from but we were tearing down the bunny hill at a pretty high clip. Spencer did 4 runs in about half an hour. He turned where he wanted to go, cruised over the bumps, avoided the obstacles, you name it. When Mom had ahold of the harness Spencer was complaining that she was holding him back too much. He wanted to go faster. So from then on he had Dad hold the harness 'cause he thought Mom was too slow. So he can pretty much ski on his own now, with one glaring problem area...he doesn't know how to stop. That's the next step, and when he masters that he'll be leaving Mom and Dad in the dust. We were bursting with pride after that session. It made all the crazy hassle of driving up here worth it right then.

And please see the last update for news about the Rainbow of Heroes Walk that we will be doing on May 7th at Duke to benefit the Duke Transplant Family Support Program. We are trying to raise funds through Spencer's team, Spencer's Rockets. Hopefully we can be one of the top teams. Thanks so much for several great donations already, a couple inparticular from our windsurfing friends Warren and Debbie Thomas from Santa Barbara, and Bruce Cunard from Maryland. Go Spencer's Rockets! You can donate two ways: directly and securely online at www.rainbowofheroeswalk.org (be sure to select team Spencer's Rockets), or you can send us (or Duke) a check before we head to North Carolina. Checks should be made out to Duke PBMT-05RH  and the our address is P.O. Box 272, Cambria, CA 93428.

And we are very happy to report that Parker, who is undergoing transplant at Duke right now, is starting to engraft. Big news for them. Go Parker!

More update after our Stanford visit.

Mom, Dad, & Spencer Rocket

Friday, March 25, 2005 1:09 AM CST

Day 323

Spencer continues to look and feel great. Dad even took Spencer into the market today for the first time in a year. Spencer had a colosal meltdown at the checkout counter because Dad wouldn't let him get a chocolate that was wrapped in orange paper (curse the people who put those buckets of candy right next to the checkout counter). So I think we have a normal 4 year-old on our hands.

We accessed Spencer's port on Monday and his labs look good. Hemoglobin ticked up a hair to 9.7 and his platelets are at a record 220. Spencer's skin is also looking really good. On top of all that (besides the debacle in our little local market) Spencer has been a really good boy lately, just happy and fun. He's even a champ with his medicine. Just downs it right away.

It's been a while since we've mentioned NASCAR, ha ha. I guess we've been away from North Carolina too long. But it was funny last week as Spencer's favorite driver (and ours), Jimmie Johnson, gave Spencer a good life lesson. He was just ripping all race long. He was in the lead over half the day and Spencer was going around shouting, "I think he's going to win!" Well for all you non-NASCAR people, Jimmie led the last 30 laps but finally started getting pressured on the final lap. On the last turn heading into the checkered flag there was a bumping sliding dogfight as Carl Edwards tried to pass. Edwards nipped Jimmie by .02 seconds to win it. Oh, my, god. Spencer was a mess. He bawled for twenty minutes. We were quite sad for Spencer (and a little for Jimmie), but he has to learn you can't win them all.

And now, a look towards May and a solicitation for our fundraising efforts: Our 1 year checkup is on May 9th & 10th. On Saturday, May 7th we will be participating in the 5th annual "Rainbow of Heroes" walk, which is a walk to benefit the Duke PBMT (pediatric blood and marrow transplant) Family Support Program. The Family Support Program is a volunteer-based program, whose mission is to care for, to serve, and to lighten the burden of the PMBT community through an array of resources and services. Going through transplant is so profoundly difficult on so many levels, to have a program like this, that provides assistance for families to make their lives easier, is an invaluable and often overlooked necessity. We are particularly fond of this type of charity because it goes directly to helping transplant families when they need help the most.

The walk is a benefit for the program, but it is also an opportunity for survivors and their families to come together and honor all the children who have braved the halls of Unit 5200. It is a 5200 yard walk around the track at the Duke Center for Living. Spencer has formed his own team, called Spencer's Rockets, and we are looking for donations. Please email us if you would like to donate, or you can donate directly with a credit card (securely) at www.rainbowofheroeswalk.org. Just be sure to donate for team Spencer's Rockets. You can read more about the walk there too.

Thanks so much for checking in and hope everyone has a great Easter weekend.

Mom, Dad, and Spencer

ps, Apparently the Palo Alto Police Department has changed their policy, and will no longer be giving parking tickets at LPCH.

Thursday, March 17, 2005 1:48 AM CST

Day 315

Not much medical news to report on Spencer, but he certainly has been having a grand time. We spent from last Wednesday through Monday at Gramma Betty and Papa Verne's house in Lake Tahoe. The weather was absolutely unbelievable. Snow everywhere but 70 degrees. It was like June. This was actually a small problem as Spencer's skin is extremely sun sensitive since he received total body irradiation back in April. We had to be very careful as not only can he burn easily, but a burn can trigger GVHD. Other than having to put sunscreen on a lot Spencer had a really great time. We haven't seen him so happy since...well, maybe ever. It was cool. Thanks so much to Betty and Verne for a great time. Gramma Betty was able to catch up on some long-lost quality time with her grandson while mom and dad took off skiing several days. There seemed to be some overdue bonding going on. Spencer will be back in early June during the Tahoe 100 mile bike ride where the Team in Training rides and raises money for the Leukemia and Lymphoma Society.

And Spencer wasn't left out of the skiing either. We took him to Northstar two days, which was a lot of effort, but semi-successful. We left Tahoe on Monday and headed back to Mammoth. That's where we are now. We're headed home on Thursday (which is actually today). Our friend Bill hooked us up with a nice place to stay again. Spencer has been able to ski even more here, once with mom and dad on Tuesday, and with the instructors at the Mammoth Disabled Sport Program on Wednesday. Again, a lot of effort, but he's always had a great time in the end. He likes to go off the jumps and rails on the beginner run (supported of course). He's psyched for another lesson in the morning before we head home. Weather is deteriorating though.

Medically Spencer is doing well. He is tired from time to time, but he's also been very active. He does still have some rash that we are keeping a close eye on. We're struggling to keep his skin moist in the dry mountain air. We'll do his next lab draw on Monday at home. We're hoping to see his hemoglobin climbing back up. That's about it medically, but he parking ticket saga continues (see last update). On that Tuesday at Stanford we were the second people to complain to the parking lot attendant and the first to complain to the hospital itself, but we weren't the last. Apparently they got a lot of complaints. The hospital was nice enough to call Mom back and update her about the situation. They complained to the Palo Alto Police Department but it didn't go over very well. The PAPD was completely unsympathetic and said they will ticket anybody for anything, anytime and anywhere as they see fit. They'll give you a ticket on the street, at the mall, in the hospital, even in your own driveway. Of course our car was parked on the street all night long the previous night and we didn't get a ticket for no front license plate. In fact we've parked all over Palo Alto for the past year and a half and have not gotten a ticket for that. But now we get one in the hospital parking lot. Obviously this was some premeditated parking ticket scheme. Nice going PAPD. The letter to the editor to the Palo Alto Daily News has been sent.

That's about it. Thanks so much for checking in. Please continue to send prayers to Jared, who seems to be starting what is sure to be a long and hard recovery. And to Parker, who has started his countdown to transplant, which will be next week.

Mom, Dad, and SpencerRocket

Wednesday, March 9, 2005 1:20 AM CST

Day 307

On Monday night we packed up and headed to Stanford for Spencer's monthly checkup, labs, pentamadine, and IVIG infusions. Our appointment was for 10 AM on Tuesday and we definitely set some records for fastest day ever. Now we immediately demand that either Marian or Wanda access his port, and if they aren't available then Dad will do it. Wanda was excited to see Spencer, and WOW, what a port access...bing, bang, boom, bam! done. Blink and you missed it, and perfect. The respiratory guy was in two minutes later and whipped out the pentamadine treatment. A few minutes after that they started the IVIG, no fuss, no muss. That's a long infusion so we didn't get out of the day hospital until 1:30, but that was still a record, and it all went great.

Spencer's labs came back pretty good. His hemoglobin has been very very slowly trending downward over the past few weeks. It's down to 9.5 now and it's usually over 10 or 11. He's been complaining of being a bit tired lately too. Don't know if it's related to his hemoglobin. When the numbers get down to the infusion level of around 8 the kids are definitely fatigued before getting a packed red blood cell pick-me-up. Part of his blood differential - the eosophils - are up again, which indicate some GVHD going on. His rash has flared up a tiny bit on his face an body too. It's not too bad but his skin had been as perfect as ever the week we got home from Duke. But all in all Spencer is doing great.

Now here's a story I have to tell, and it's just another reason we have mixed feelings about Stanford, not that this might have been their fault or not. So, we arrive and park down in the parking garage. It's a gated parking area with an attendant that is specifically for the poor souls who have to go to the children's hospital. After about an hour I went to get something from the car (an elephant seal DVD for the pentamadine guy to be specific), and I'm shocked to see a parking ticket on the window. Absolute befuddlement followed about what I could possibly get a parking ticket for in an attended lot. The car is tightly parked nose to nose by another car but the ticket is for not having a licence plate on the front of the car. In all the parking lots in all the joints in the world this would be the very last one you would expect to get a ticket like that in.

I went back to the hospital just reeling in confusion. Who would even be patroling the lot? The hospital staff were dumbfounded too. At the end of our day we went back to the car and noticed four more cars with tickets, all for not having a front plate. Some Palo Alto parking cop actually went down to that lot to give tickets specifically for not having front license plates on. $70 dollar tickets! Either that or you go home, find your plate if you can, put it on, go find a police officer to sign it off, put the signed ticket and $10 in the mail, all within 21 days. If we were parked on the street, at the mall, downtown, at the university...ANYWHERE I could understand, but NOT the children's hospital. I'm sure all the parents, who would rather be anywhere else in the world but there, who have gone through untold hell to save their child, who have dropped two income brackets, who have had their world turned upsidedown, who maybe are inpatient for weeks on end, who may be hundreds of miles from home, who maybe have their child in the PICU on life support...were so thrilled to find a $70 parking ticket on their car for not having their front license plate attached. Give me a break! Palo Alto, go do your revenue raising elsewhere. I think it's time for a letter to the editor.

Whew! Now that I got that off my chest... After our day at the hospital, gluttons for punishment that we are, we drove to Gramma Betty and Papa Verne's house in Lake Tahoe. We plan to stay here the rest of the week and do whatever it is you do in the mountains. Weather is supposed to be beautiful all week. Spencer can choose to ski a bit, swim in the pool, or just hang out with Gramma Betty. Should be fun.

Thanks so much for checking in and please visit our friend's Ben (who's had some good news lately), Jared (who needs some big-time prayers), and Parker (who's homesick already) for some much needed hello's.

Mom, Dad, and Spencer

Sunday, February 27, 2005 0:34 AM CST

March 1 - The Big 300!

(All new photos in the album.)



Day 297

Spencer Rocket has landed, again, back in Cambria. We're all kind of in a daze but everything is good. Pretty much to report so hopefully this wont get too long.

First off, today, February 26, used to be known as Gramma Marge's birthday. But it is now unfortunately known as relapse aniversary. It was exactly one year ago today that Spencer was napping like a sweet little baby on the couch when the phone rang. It was one of those frozen moments in time that you never forget as Dr. Twist explained about Spencer's central nervous system relapse. A lot has happened since that day.

And now a bit more on the medical side of our visit to Duke. Some immune function tests have come back but not all, and so far his immune system looks "a lot better". Dr. K still suspects he may be as high as 80 pecent when the whole official shebang comes back. The FISH test came back as 100 percent donor cells again. Can't get better then that. We had hoped to start weaning some medications after our visit but we were denied. Spencer's rash has been getting progressively better and better over the past few months but it still seems capable of flaring up from time to time, and his skin is very dry with some excima here and there especially on his face. Dr. K says that about 20 percent of her patients experience a flare up of some nagging GVH at about this time, particularly with the medication wean. These flare-ups burn out with time but they can persist for a year or two and require continued expensive medications. She feels that if we hang on to the cyclosporin for another couple months we may be able to dodge any complications, especially since Spencer handles the medications very well. We're not too bummed about this as we feel she's probably right. We'll go with her instinct. So Spencer's meds stay the same for now.

One thing that did change is our home schedule. We are now down to twice per month blood draws, which means one will be done at home and one during our monthly visit to Stanford. We also no longer have to get a weekly checkup at our pediatrician's office so that's a nice free-up of our early Tuesday morning schedule. Looking towards the future, we'll stay on the monthly Stanford trips for IVIG and Pentamadine for now, then we'll head back to Duke for our 1 year studies in early May. As long as things are still looking good we'll start Spencer's cyclosporin wean which takes 6 weeks. Other meds like the amlodipine (blood pressure med) and voriconizole (fungal infection prevention - $$$$$) will likely be reduced over time as well. Best case scenario, Spencer could be off most medications by late June. We suspect he'll still be on a small dose of cortef (hydrocortisone) depending upon his adrenal gland function. Hopefully we'll be able to keep that schedule. If we do, then we can schedule surgery to remove Spencer's mediport when we head to Duke for our 18 month studies in early November. The day that port comes out there's going to be a big party as it will be very symbolic of returning to full health.

Other develpoments are: Spencer is off all food restrictions, not that it matters that much because all he eats is pasta anyway. But the minute we got back to our hotel room after Dr. K lifted the food restrictions, Spencer went straight to Mommy's bag of pistachio nuts and proceeded to make a big mess. He'd been waiting a long time to chow those things down. It was pretty funny. We didn't get the okay to eat inside at restaurants, however, which was kind of a bummer during this trip and even now because it's freezing outside at dinnertime. But Dr. K did say it was time to start getting Spencer back towards normal kid stuff. We can enroll him in an outside after school program at a nearby school. He may really like that. So, all in all, mostly good stuff came out of our trip.

Finally, our trip back was very interesting (pictures coming soon of all this). First we hopped from Raleigh to Atlanta on a wicked private jet courtesy of BellSouth. It was a Falcon 900 and we were blown away. But we were more blown away by how nice everyone was. Spencer was showered with gift bags with things in them from stuffed animals to walkie talkies to coloring stuff and candy. It was so great, but it was really over the top. How can you thank someone for something like that?

After the flight we were driven to the Crowne Plaza Hotel on "The Perimiter". We finally figured out that the perimiter was the same thing that cities in North Carolina call a "beltline" - just the freeway that encirles the city. Regardless, it was a bit like Planet of the Apes where you're plunked down in some strange land that actually turns out to be Earth afterall. We had no idea where we were, how to get anywhere, what to do, no car, we were just there. And it was exceedingly pedestrian unfriendly. We eventually succeded in renting a car and headed off into the unknown. Actually, we did know about one thing - Atlanta traffic. But by some miracle we deftly avoided any big traffic jams, even Friday afternoon when we had to make it across town back to the airport. So on Thursday we went to the Fernbank Natural History Museum, because Spencer really really really wanted to see the dinosaur display. It was a highlight when Spencer finally found the model of the T-Rex - he was scared out of his wits. I tried to get him to pose for a picture but all he could do was bolt for his life into the next room. Unfortunately for Spencer the next room was the swamp exhibit where a giant alligator was lurking next to the walkway. He was stuck between the T-Rex and the alligator crying for his mommy. It was classic.

On Friday we headed to Zoo Atlanta. It's a fantastic zoo with bunches of gorillas and even a couple panda bears. Unfortunately Spencer was being a bit of a wimpy pill for most of the day. He really really really wanted to see the zoo, but once we got there all he wanted to do was go ride the silly little train. Oh well, he's only four. While at the zoo we got a call that our flight from Atlanta to LA had been moved up nearly two hours. This put us smack in the middle of rush hour but we still had three hours. We decided to try to get to the Atlanta Maggiano's restaruant. We got there fairly easily well before any dinner rush only to walk in with the entire Georgia Tech basketball team. The amount of food that came out of the kitchen for those guys was staggering. The whole time we were in Durham, Nancy and Debbie at Maggiano's never let us pay for a meal. This time we had them outsmarted...or so we thought. There was a delay in them taking our order because of the basketball team so the manager said he'd buy us dessert. We said that wasn't necessary at all. It wasn't that much of a delay and we had to get going anyway. When he found out we were headed to the airport he just comped our whole meal and wouldn't hear anything about it. Foiled again.

Finally we took off across town towards the airport. We elected to stay on the surface streets instead of risking getting stuck in a traffic jam on the freeway. That was a good call, plus it was the scenic route. The thing we noticed about Atlanta was that you could go from nice middle-class neighborhoods, to palacial colonial estates, to sketchy ramshackle shacks all on the same road all within 3 or 4 miles. We did make it to the airport with plenty of time to spare and headed straight onto one of Coca Cola's Gulfstream IV jets. Did I mention how radical BellSouth's jet was? Well multiply that a few times and you'll have a Gulfstream. Sticker price for a used one of these babies is about $28,000,000. Words can't even describe it, but I suppose there ought to be a few perks to this whole leukemia/transplant thing. This was the smoothest flight we've ever experienced. The weather was good but these jets cruise at 43,000 feet up in the smooth air above all the other common folk bumping and bouncing in the dirty air below. It was truly amazing. Thanks so much to Corporate Angel Network, Duke Energy, BellSouth, and Coca Cola for getting us to Duke and back in style, and without germs.

Then we went from our Gulfstream jet back to reality in our Dodge minivan and headed home. Thanks for making it through this long update. Look for some pictures in a day or two. And please keep praying for our friend Jared and his family. They need a break.

Mom, Dad, and Spencer

Tuesday, February 22, 2005 11:59 PM CST

Day 293

We have completed all required diagnostics and testing and all systems are functioning within normal operating parameters. Ensen - set a course for Cambria, 37.5 mark 1480...AyeAye sir...Engage!

In other words, Spencer's ripping and we're outta here. We finished with all the blood draws including two port accesses, the second one (today) of which apparently didn't go entirely smoothly. Dad was out rounding up breakfast when the first attempt failed and things were in mayhem. But by the time the food wagon showed up the second attempt was successful and peace had been restored. Monday was the chest x-ray, lung function test, echocardiagram, and a hastily scheduled CT scan. The scan was not originally scheduled but Spencer had developed some crusty boogers that seemed to be swollen or infected sinuses perhaps from the dry mountain air a few days ago so Dr. K added the scan. Spencer also started some antibiotics for a sinus infection a couple days ago and things seem mostly cleared up already.

All those tests came back in the normal range with no abnormalities. Spencer's labs are great. And we don't have the immune function tests back yet but by Spencer's lymphocite counts Dr. K guestimates that he could be as high as 80 We should have those back by early next week. Regardless he has improved dramatically. And Spencer's skin looks great and of course that hair. In fact, many people didn't even recognize Spencer until they saw the parents as well. Apparently we haven't changed. Everyone was so happy to see Spencer. Of course we saw many of Spencer's doctors and nurses, but we also saw Georgia and Vannessa from the office at our old apartment. They were ecstatic to see Spencer. And we even went out to dinner at Maggiano's with Andria, Spencer's primary nurse in 5200, where we also saw Debbie and chef Nancy. It was cold outside and Spencer wasn't too happy about that but we still ate ourselves silly. Unfortunately I forgot to bring the cable for my digital camera so photos will have to wait until we get back.

Speaking of getting back, we're flying out from Raleigh to Atlanta around 1 PM Wednesday on a BellSouth jet. We hang out for two days in Atlanta and fly to LA Friday evening courtesy of Coca Cola. Good thing we don't like Pepsi, but we'll have to lose Spencer's Jeff Gordon car.

Finally, we finally got to meet the Fritsch Family on Monday night. We went to their apartment and Spencer, Parker, and Connor went nuts. It was fun to see Spencer playing with a couple boys near his own age. He ate it up. Click on over to their site to see a great picture of them. We also saw them in clinic today where the boys went outside and played a lot more. We wish them all the best as they head to transplant. We so remember being in their position wishing we could fast-forward to people in our position. The cycle continues. We hope Spencer's given them some encouragement to just keep focused straight ahead, grind through it, and poof, they'll be on the other side before they know it. Thanks for checking in and we'll update again when we get home over the weekend.

Mom, Dad, and Spencer

Thursday, February 17, 2005 10:56 PM CST

Day 288

(All new photos in the album!)

The Rocket has landed...in Charlotte, North Carolina. We had a great (and extremely fast due to the 140 knot tailwind) flight from LAX to Charlotte on Thursday. This is the second Corporate Angel Network flight we've taken and as luck would have it they were both on the same plane from the same company with the same pilot. That was pretty cool. Spencer was super happy to see pilot Kelly again. And again, it was Duke Energy who provided the flight. I hope we didn't take over the plane too much as Spencer did get pretty wound up once or twice...oh, and did I mention we were flying with Duke Energy's CEO? Thanks Duke.

Leading up to the flight the Caserio family accomplished something that we have been unable to do for a couple years...make a pretty tight plan and stick to it. Depsite having our flight moved up a couple days from Saturday to Thursday we decided to still try to go to the mountains for some skiing. We drove to Mammoth Mountain on Sunday, signed Spencer up for ski lessons for three consecutive days with the Mammoth Disabled Sports program, then, after skiing, drove on Wednesday directly to LAX and departed LAX by 8 AM Thrusday morning (a chore unto itself for us), arriving in Charlotte by 3:15 PM EST. And we even hung out with, and are staying the night with, our windsurfing friend Alan White in Charlotte. To us, to pull off this plan was pretty amazing given our tenuous adventures for the past year and a half.

The ski trip was pretty physically exhausting, especially because none of us could sleep at night the entire time we were there, including Spencer. But the snow was great, eventually ending in over a foot of powder on Wednesday. Best of all Spencer did great in his ski lessons. We kind of overdid it with him the first day, but he rebounded, eventually getting excited for his lesson the second day. The third day he only made one run in his lesson and then a second with mom and dad, but he was still happy. That could not have made us happier. Two things that helped this was the great instructors keeping Spencer excited and the fact that there was absolutely zero wind every day, even when it was snowing. It was beautiful.

Less than 24 hours after our last run with Spencer we find ourselves in North Carolina, where the weather is fine. We all went out to eat tonight where Spencer ate more pasta in one sitting than I've ever seen. We sat outside and froze our tails off. We'll hang out at Alan White's house (or as Spencer calls him - alanwhite) Friday morning, perhaps even take a canoe ride (he lives right on Lake Norman) before heading to Durham Friday afternoon. Our studies at Duke were supposed to start on Monday but our NP Barbara called and said Monday's have been too crazy so she modified our schedule a bit. Now we have to go to the clinic on Sunday for a blood draw. Then all the other stuff on Monday, which are not in the clinic. Finally we see Dr K. on Tuesday. The bad news is they can't draw blood for the immune function tests on Sunday so we have to access Spencer's port again on Tuesday for this. Spencer won't be too happy about that. Equally as bad (not really) is that we have to go to the clinic on Sunday afternoon. What's the problem with that, you ask? Well the Daytona 500 of course. C'mon, get with the program. We'll have to work this out somehow. Go Jimmie.

Finally, our return trip has been changing around a bit so nothing is set in stone. One complication is that our car is at LAX so we need to get back there somehow. Right now we're flying to Atlanta on Wednesday, staying there until Friday when we fly back to LAX. That could change though. Spencer has been pretty clear that he would like to go back to Cambria pretty much right now. We'll try to make this trip to North Carolina more fun that our last one. Thanks for checking in and please keep sending your positive thoughts and prayers to our friend Jared and his family.

Mom, Dad, and Spencer

Friday, February 11, 2005 3:21 AM CST

Satuday, Feb. 12
Day 283

Just a mini update as Mom took Spencer to do something rather special today - to get a haircut! Spencer was pretty excited. Also, I'm sure everyone who follows NASCAR ( Fritsch family - if you're reading this that'll be you pretty soon - welcome to North Carolina) noticed who won tonight's preseason race - someone with the initials J.J. in the number 48 car. Needless to say Spencer was pretty excited about that too. Now back to our regular update - and p.s. apparently Jared is showing some degree of improvement. He needs more.

Day 281

Unfortunately we have to start off with some pretty devastating news. We've been just shattered by the news that Spencer's transplant buddy Jared suffered a stroke on superbowl sunday. He is sedated and on a ventilator in the ICU in Orlando with an unknown prognosis at this point. We can't even believe it. Lynn and Don and Jared became our closest friends at Duke and Spencer and Jared were bonded by their transplant experiences. Jared had struggled with some of his blood counts lately but they had just returned from a good checkup at Duke and were on the rebound, excited to look forward again. Otherwise this came out of nowhere, over nine months out. Needless to say we've been in quite a funk since learning of this. We all are praying that Jared will quickly find out that his favorite team won the superbowl, which will surely bring a big smile. Please send them your prayers.

On the Spencer front, we just returned from our Stanford checkup, and it was another good one. Spencer's counts are good, even the one blip we noticed a week and a half ago has trended back down. And Spencer did great in the Day Hospital with is pentamadine and IVIG. And we got to see quite a few old friends. We saw Kristen from pet therapy and the play room, who was so great with Spencer last March. We also saw Ali and Aiden and their moms. We even got some cancer mom photos outside the hospital at the end of the day. Great company but not a club anyone would aspire to belong to. I'll try to get some of those photos up soon. We also got to see Marilyn, the chaplain at LPCH who has been so great through this whole struggle. She has waited a long time to see Spencer again. And we finally got to see Yeni, Spencer's favorite (okay, and Shannon too) from 2 North (the inpatient unit at Stanford). That was a great reunion. Finally, it was very special to get to see Jody Murphy, who has been through, and continues to go through so much with her son Ben. We didn't get to see Ben as he was at home, but it was good to give Jody some hugs. They need some good thoughts and prayers as their struggle continues.

And we have some movement on our trip back to Duke. All we needed to get a Corporate Angel Network flight was to book and pay for some commercial tickets, which we did last week. So today CAN calls and says they have a flight from LA to Charlotte next Thursday. That's a great itinerary as far as we're concerned so we took it. We don't know what we'll do with the other tickets, maybe change them to May, but we're happy to be able to protect Spencer from a commercial flight for now. Especially because it seems the flu season is starting to hit full throttle right now. So our appointments at Duke are on the 21st and 22nd. We may even be crazy enought to squeeze a quick snow trip in before then. We'll see. Spencer says he'd like to go.

Thanks so much for checking in, and hug your kids.

Mom, Dad, and Spencer

Thursday, February 3, 2005 2:48 AM CST

Day 273

Three days past the nine month mark! And doing good! We accessed Spencer's port for a blood draw on Monday as usual, plus the Dr. Mary day on Tuesday. Spencer's lab numbers came back great. There was one anomaly in the blood differential (where they break down the different types of red and white blood cells). This caused us some stress to say the least, but Dr. K reassures us that it is a mild form of GVHD and we shouldn't worry too much. Okay, we'll try.

Speaking of Dr. K, we still haven't headed back to Duke yet. And they would really like to see us. The Corporate Angel thing just hasn't worked out yet. We're probably going to fly commercial in order to hit some appointments on the 21st and 22nd. Next week we have our appointment at Stanford - on Thursday this time. We should be able to see some of our old friends this time, as we have been going on Fridays when no one is around. And if all goes well we may try to sneak in another snow trip in between Stanford and Duke, but that could overwhelm us, so we'll see how it goes. Spencer says he would like to try skiing again.

In the meantime it's just been crazy gorgeous weather, with no end in sight, so we've been trying to keep Spencer's little legs going. He is getting stronger and stronger. Even a couple months post transplant Spencer couldn't step up a one inch step, to say nothing of stepping down it. Lately he has been jumping off walls that are shoulder-high to him, say two and a half feet high (onto sand). He still doens't compare to the typical kid his age but we are happy that he keeps progressing. The ladies at OT and PT have been very happy with his progress as well. We are working on his confidence level too. That's one reason we really want to get him up skiing again. It does wonders for him.

We are anxious to get back to Duke so we can start some more med weaning. We are also hoping to cut back on the weekly blood draws (port access). With Stanford next week, and Duke 10 days later, we shouldn't have to access him again at home for quite some time. While at Duke we'll meet a family from California that we've been in contact with that is just heading there now for a transplant. We have been able to give them some of our tips for living in Durham and they even rented a place in the same apartment complex. We wish them the best and stop by and say hi to Parker on his website. Thanks for checking in and enjoy the weather (if you're in California).

Mom, Dad, and Spencer

Thursday, January 27, 2005 2:06 AM CST

Day 266

We accessed Spencer's port on Monday for a lab draw. It didn't go very well relative to our previous efforts but we eventually succeeded. Perhaps we're out of practice. Spencer's numbers are still good. And Tuesday Spencer passed his inspection with Dr. Mary, his pediatrician. So all is well on the medical front.

As for our attempts to get back to North Carolina for Spencer's 9 month studies, well, that's another matter. Corporate Angel Network had been unable to find any flights until today. They finally found one going from LA to DC on Sunday. Nothing for the return trip at the moment. Unfortunately there were two problems - first there's supposed to be a small to moderate ice storm back there this weekend and it's a 5 hour drive in a rental car from DC to NC, under good weather conditions. We weren't too excited about that. Second, Duke informed us that so many patients are coming back for follow-up appointments next week that they don't want us there. End of story. We're thinking of flying commercially during President's day week. We'll see. For now we're just floating around.

Otherwise, the house is a mess, the business is in chaos, the parents are frazzled, and the child is a handful. In other words, things are going great. That's it for now. Thanks so much for checking in.

Spencer, Mom, & Dad

Monday, January 24, 2005 3:34 AM CST

Day 263

Well we hope everyone got to tune in Extreme Makeover - Home Edition on Sunday night when our transplant friend Jhyrve got here house made-over, big-time. It was really cool and I think Mom cried all the way through it. We are so happy for them.

So our appointment for our 9 months studies at Duke is...tomorrow (today acutally, because it's late). Only one problem - we're still in California. I think we'll miss it, and by the sounds of the weather back there it's just as well. We've been having a heck of a time finding a flight. Corporate Angel Network hasn't been able to come up with anything, save for a couple flights that include a 9 hour drive, two day layover, train ride, more long car rides, and an oxen cart. They are going to continue looking and if something comes up we'll let Duke know and they'll squeeze us in. This could go on for the whole month of February so we're in a state of limbo right now. We'll see. Regardless we'll be doing a blood draw tomorrow (today) and seeing out pediatrician on Tuesday just like normal.

Spencer is doing great. He's really been active lately, wanting to play all day and not really making any progress in the entertaining himself department, not even for a few minutes. Mom and Dad are pretty whacked out. Actually, Mom came down with a pretty bad cold last week after we got back from Stanford. It was our first real test with known cooties in the house. Mom had to try her best to stay away from Spencer for three days. That was hard, and it was hard on Dad too because, well, you know why. But somehow neither Dad or Spencer came down with anything. Big sigh of relief on that one. A couple times Spencer's nose started to run and we'd be all, "oh! uh oh!", but fortunately it never went anywhere. Mom's pretty much all better now and she played with Spencer all afternoon today so Dad could clear his head a little.

One very depressing note; our friend Ben Murphy from Stanford, who we've mentioned a few times and who underwent a second transplant a few months ago is apparently starting to relapse again. He was doing so well and looked to be defying the odds. We're still kind of stunned. It's early still and they do have some treatment options that are definitely no fun but please wish them well. They've already been through so much.

Thanks for stopping by.

Mom, Dad, and Spencer

Monday, January 17, 2005 3:08 AM CST

Day 256

(One more photo collage in the album.)

Our whirlwind tour through the stormy Sierra, over the epic powder, over the mountains again, to the hospital, and home is over now. First things first - Spencer's checkup at Stanford went great. His labs are all really good, platelets were 203, hemoglobin 10.5 and white count around 4.5. His rash is super minor, save for some pimply feliculitus type stuff on his cheeks and chin. We're putting some creams on for that and it seems to be staying in control. Our next stop is Duke on the 24th and 25th of this month for our 9 month studies. We've got our appointments scheduled but we haven't heard anything about a flight back there. We're doing the Corporate Angel Network thing again and it looks like we won't have much notice if and when a flight comes up. Kind of a pain.

As for the fun stuff, Spencer had a great time at Mammoth. After his first day of skiing and sledding it continued to storm pretty hard so we were fortunate enough to line up some personal babysitters for the next two days. Spencer was a regular from time to time both at the daycare at the mountain when he was an infant, and at the daycare center down in town when he was 2. Mom called them up to see if there was anyone willing to babysit Spencer. They were super happy to hear that Spencer was well enough to return to Mammoth (they'd been following his journey through this site too) and were super helpful in lining some stuff up for us. We got Gemma from Australia to come over on Monday and Cort to come over on Tuesday (see photo album). Then there was Wednesday, which really made the trip.

Wednesday was a stellar bluebird day after days upon days of snow so everyone was amped to hit the virgin powder. We kind of wanted to get Spencer back on skis but figured he just wouldn't do it right with us around. We though he might need a lesson, but a private lesson was way too expensive, and he couldn't do a regular lesson given his immune system restrictions. So, we went with another great babysitter - Emma from New Zealand. She showed up early so Mom and Dad could get out for the epic powder. Unfortunately she seemed to have an inconsistent, deep gutteral cough. Sometimes you can just have that crud for months on end when you move to the mountains, but Emma said she'd only had it for a couple days. We decided not to risk anything and sent Emma home with appologies. Then Mom called about a lesson for Spencer. A regular lesson was out but they forwarded our info to Mammoth's disabled sports program. They called back right away and told us that due to Spencer's medical condition he qualified to enrole in the program. He could get a 2 1/2 hour private lesson for about 1/3 the price. We jumped on it and boy did it turn out great.

Spencer was swarmed by Kathy Copeland and the other women at the Mammoth Disabled Sports program and got an insane private lesson with 2, 3 and even 4 instructors at a time. They really charmed Spencer (and Spencer charmed them) and boosted his confidence. Mom and Dad went off on their own while Spencer learned a bunch of stuff and ended up taking, by Spencer's count, 5 trips up and down the chairlift. And Spencer would ski down all by himself (attached to a harness) about half way before he realized he was doing it by himself and would ask for a bit of help. They were so great there and we're excited about how much he can learn if we can get back up to the mountains some more.

And now for something completely different: We are of the opinion that the most positive and uplifting show on TV today is ABC's Extreme Makeover - Home Edition, where they pick some deserving family and radically trick out their house for them. If you haven't seen it, then you ought to check it out. We just want everyone to tune into the show next week, January 23 at 8 PM, when a family that we got to know well at Duke is going to be the subject of the show. Jhyrve had her transplant a few weeks before we got there, was inpatient the whole time we were inpatient, and we saw her and her mom at the clinic nearly every day. Jhyrve has had a long, slow, and difficult recovery from transplant. They had to visit the clinic daily for months and months post-transplant. Plus, they're also from California so they were gone a long time from home. The film crew travelled to Duke and shot footage of the clinic scene, interviewed Dr. K and the whole bit. Then when Jhyrve and her mom finally got to go home after something like 10 months at Duke, they came home to a new house. They definitely deserve it. ABC, next Sunday the 23rd at 8 PM. Be there.

Thanks for stopping by.

Mom, Dad, and Spencer Rocket

Tuesday, January 11, 2005 2:02 AM CST

Day 250

New Photos in the Album!

No update for a long time but it's because we've been having some fun. Our next appointment at Stanford is on Friday and we thought we might take the long route up there, like the week-long route. In getting back to our old ways, there's one thing for sure, if there's winter weather to be had Mom and Dad like to be in the thick of it. We headed up to Stanford last Saturday, but took a four day detour around the backside of the Sierra Nevada, stopping off at Mammoth Mountain for some snow time. Sure, there were epic 185 mph wind gusts at the top of Mammoth the day we drove up. Sure, it's snowed over ten feet since Christmas, and a few since we've been here too. Sure we got stuck overnight in Bishop because the weather was too gnarly to keep the roads open. Sure we're tired, but we're having a good time.

Sunday we took Spencer skiing for the first time in two years. It was snowing a bit and he wasn't super keen on skiing, but then Dad took him sledding afterwards and Spencer ate it up. He made a snowman, threw snowballs, rolled in the snow, made a snow fort, tromped and fell around in the deep powder, and of course made a lot of solo sled runs. It's the most active we've seen him in a couple years. Boy did he have fun. Today it was snowing a bit harder so Mom and Dad made it out for some killer powder runs. Super fun day. Our good friend Barnacle Bill hooked us up with a great place to stay, right next to the lift, super great for the whole family. And we made some epic powder runs with Bill and his son Morgan today too. They're looking for another 2 feet of snow tonight and tomorrow morning so the fun will continue. Wednesday it's supposed to be sunny, just in time for us to head north back over the Sierra to Stanford on Thursday morning. Shouldn't be any travel problems by then.

Otherwise, we have our schedule for our 9 month checkup at Duke. It's on the 24th and 25th of this month so we have to figure out how to get back there now. So that's the news. Spencer's doing great and check out the photos in the album of some snowy fun. Thanks so much for checking in.

Mom, Dad, and Spencer

Saturday, January 1, 2005 2:18 AM CST

Day 240

Happy New Year everybody!

The Caserio family partied down big-time on New Year's Eve. Spencer had some pasta with white sauce going, Mom and Dad had some soup and a quesadilla, Spencer's other girlfriend was on the Food Network - Rachael Ray, Spencer and Dad made some paper airplanes...well, obviously a big party. Nice and boring, just the way we like it.

The obligatory reflections on what's happened over the past year revealed that it was a big year, personally for our family, other families that we met, and worldwide - sports, politics, war, disasters, discoveries, you name it, it was a big year. Mom got out our calendar and flipped through the months so we could see all the checkmarks as we ticked off every day since transplant. There were lots of them. And each previous month brought back the time and place, and the changes we went through. The second half of 2004 was like a little accelerated lifetime. But as forgetable as we'd like 2004 to be, it ended with such healing and hope that it will be a year that we will never forget. By contrast, 2003 was a happy, healthy year until the end when we were pretty bummed out - not as bummed as we would get a couple months into 2004, but with a long arduous road ahead of us nonetheless. It's better to end on a high note.

On our high note we'd like to remind everyone to send any extra thoughts and prayers to the families facing or going through transplant right now, at Duke, Stanford, or anywhere else. There's never a good time for something like that, but over the holidays seems pretty harsh.

A Couple Spencerisms:

We haven't been keeping up with the Spencerisms lately but there's been some good ones. Ali (fellow Stanford patient nearing the end of her treatment) and her mom Marey came by the other day when they were in the neighborhood checking out colleges for Ali. It was fun, and it was raining pretty hard so they ended up staying the night, which meant a lot of time for the Moms to talk. When Ali and Marey left the next day Spencer sat down next to Mommy, let out a big sigh, and said, "Mommy. Boy oh boy, that sure was a lot of talking."

And whenever Spencer smells something and he wants you to smell it too, especially a skunk as we're driving by in the car, he says, "Daddy, make your nose go."

Happy New Year.

Tuesday, December 28, 2004 0:59 AM CST

Day 236

Hard to keep up with those big numbers. 236, wow. We remember looking at some of our trantplant friends' Caringbridge sites and seeing their days post transplant way up there in the 200s and beyond. We used to wonder how we could get there. And now we are getting there. Pretty cool.

Spencer had a quiet, but fun Christmas. It was really about 3 days of Christmas. Gramma Betty was here doing most of the cooking on both Christmas Eve and Christmas Day. And all the food is what really makes it feel like Christmas so thanks to Gramma Betty. Okay, you need presents too, especially when you're 4 years old. Gramma Betty and Papa Verne, and Gramma Kristie and Grampa Ernie were here Christmas Eve and Spencer got lots of presents. Then we had Patty and Billy over on Christmas Day and Spencer got some more presents. Then Gramma Marge and Grampa Fred came over the day after Christmas and Spencer got to open more presents. He was in a zone.

But even with all that it seemed all the presents were within reason. Spencer got mostly small stuff...cars and flashlights and the like, things he likes. So the house wasn't overrun by giant plastic garbage, much to the parents' delight. On Monday we accessed Spencer's port at home for the first time in three weeks. Spencer was so great with it, and it went really smooth. And all his lab numbers came back great. Platelets back up over 200, hemoglobin at 11.1, white count at 4.0. Very nice. And Spencer looks great. I'll try to get some new photos up soon.

It's a pretty active end of the year for the Caserio family. Halloween goes into Spencer's birthday, which goes into Thanksgiving, which goes into Christmas, which goes into Daddy's birthday (the 28th), then it's finally over. Spencer's doing so great and getting much stronger so we're considering a quick trip to the mountains for some sliding around. We'll see.

We hope that everybody had a great Christmas and will have a great New Year. We certainly are looking forward to a great New Year. Thanks to everyone for wishing Spencer a Merry Christmas.

Mom, Dad, and Spencer

Saturday, December 18, 2004 0:58 AM CST

Day 226

Spencer had his monthly Stanford checkup today, in fact, we are still up here. We are staying an extra night so we can see Robert's Mom Katherine. We're going to meet her tomorrow morning and just lend some semblance of support to her. Some people say we've been through a lot, but not compared to Kathryn. It's so hard. What can you say when one family struggles and finds success while another struggles but loses the battle? Suck.

Our appointment was at 10:30 and it was a bit chaotic in the beginning as, unbeknownst to us, clinic D had moved and was lumped into Clinic E with tons of other kids...a bit stressful with a transplant patient. We did get one of our favorite nurses, Marian, to help us out to bypass the mess. I guess this is the very first stage of a large remodel to Lucille Packard. This is badly needed but it's going be hard for the next 18 months as they tear the place apart.

After that things went very smoothly. Spencer hasn't had labs drawn for 11 days so it was great to see the good numbers when the labs came back. Everything was great - platelets at 185, hemoglobin at 11.3, chemistries all good. The kid is ripping. Then we had our monthly pentamadine and IVIG. Took a while but we had our own room in the day hospital (big difference) and we were out of there by about 3:30. And Spencer was great the whole time so he got to go in the little gift shop and get a new little car - a bug car. We also got to see some more of our favorite staff people that we haven't seen yet. We saw Dr. Kwo, who was on the night Spencer was diagnosed, Jaime from the play room, and Wanda, one of our favorite nurses from Clinic D. So that was nice. We had been remarking that our last memories from Stanford before we headed to Duke was from our last day inpatient- Spencer had an NG tube crammed down his nose into his stomach for several hours of a substance called golytely (pronounced "go lightly") to unplug his bowels. It was supposed to unplug him in 2-3 hours or something like that but it took nearly 7, and it took way more liquid than he should have logically been able to hold. It eventually worked though. The image of that stuff flying out of his mouth a foot into the air like a miniature Old Faithful, while the other end was doing the same, is permanently etched into our minds. We're having happier memories now.

We'll have one more Stanford visit next month before heading back to Duke for our 9 month studies. And oh, yeah, lest I forget, there is one other rather large tidbit of news - Spencer is off steroids. I repeat - Spencer is off steroids!!!!!!!!!!!!!!!! SPENCER IS OFF STEROIDS!!!!!!!!!!!!!! That is something good that happened Thursday. Almost let that slip my mind.

And now we head towards Christmas. We got a tree and Spencer is starting to buy into the whole Santa coming down the chimney, eating milk and cookies, stuffing the stockings with stuff scenario. It's pretty cute. Although he hardly needs more stuff. Mommy nearly had a nervous breakdown the other day because of all the toys that were all over the place. And Spencer's a dumper - grab the whole bucket of cars and - DUMP. We're trying to make Spencer the dumper in to a Spencer the cleaner upper. We'll let you know how that turns out in about 30 years.

Well thanks for checking in and we sincerely hope that everybody has a happy holiday season.

Mom, Dad, Spencer Rocket the Dumper

Thursday, December 9, 2004 2:15 AM CST

Day 217

(12/11 - New photos in the album!)

Spencer continues to roll along. However, we are afraid that he might start rolling along literally if he keeps eating like he is. The growth spurt is still in full swing. He was over 45 pounds at Dr. Nave's office on Tuesday, and of course he's grown nearly a half inch in the last month. We can see him packing a few extra ounces around the belly area lately too, kind of like Dad. He's catching up.

Spencer's labs continue to be great, and the port access seems to finally gotten to be somewhat routine. But Spencer's doing so great that we pushed for no labs next Monday, so we'll just do them at Stanford on the 17th. That'll mean only one port access over the next three weeks. And we've gone down with the steroids again to the lowest and last level. We may be able to stop them completely in about two weeks...if Spencer keeps doing well. His GVH skin rash is all but completely gone at the moment. It's pretty amazing. He's got nice smooth baby-soft skin again with no bumps anywhere. Crossing our fingers that that continues.

And Spencer is exerting his will as a four-year-old. exploring the limits of his domain from time to time. Don't get me wrong, he's an amazing kid 95 percent of the time, but he's been reaching out lately with the other 5 percent. Maybe it's the weather, or the growth spurt.

He's been doing his pre-school thing three mornings a week with Nicole. Swimming lessons are over and the weather's been cold so we've been struggling to keep Spencer active (and maybe work on that belly). We're still working on getting physical therapy lined up again. Pretty pathetic, the stories we can tell about that hassle. And he still doesn't have any little buddies to hang out with. It's going to stay that way until he gets a bit more out of isolation mode. Just as well for now, I guess, because it seems lots and lots of people are coming down with colds and stuff. We don't want any of that nonsense. Three words - wash your hands.

Thanks so much for taking the time to stop by and see how Spencer is doing. If you're anything like us, you're whacked out busy at this time of year so we do appreciate your checking in.

SOMETHING GOOD THAT HAPPENED TODAY:
I'm officially discontinuing the "something good that happened today" column. And that is something good! We've decided that every journal entry now falls under that category, thanks to Spencer. He's the man.

Thursday, December 2, 2004 3:57 AM CST

Day 210

Sorry for the long gap in updates. Kind of busy lately with the business and all. So Spencer is doing great. His platelets broke 200 on Monday at 205. His rash is doing really really well, almost all gone at the moment. And he's just a happy happy guy.

Thanksgiving was nice and quiet. Gramma Betty came over with Papa Verne and cooked a little turkey. Spencer sampled most everything, but didn't eat leftovers. He is actually starting to very slowly vary off his pasta with white sauce diet, branching out into a couple other food groups. We hope this continues. Gramma Marge and Grampa Fred were here the rest of Thanksgiving weekend and Spencer had some good playtime with them. He really goes loves when any of the grandparents come to visit. He needs more of it.

I guess the big news is that Spencer seems to be growing again. We've kind of suspected something because he's been going to sleep really early for the past couple weeks. We convinced ourselves it was nothing to worry about and he must be having a growth spurt (although he's never slept like this before). He hasn't grown a single millimeter since Sept 2, 2003. And he's dropped from the 95th percentile for height down to the 25th percentile since he's been on chemo and through transplant. But his measurements are on the upswing. He was about 100 CM when we left Duke, and on Tuesday at Dr. Nave's office he was 101.4. So he's trying to catch up.

Alas, there is some bad news that has really affected us lately. Our friend Robert, who was 18 and battling lymphoma, passed away over Thanksgiving weekend. Robert's Mom Kathryn, and Kerri became good friends up at Stanford while Robert and Spencer were being treated. And they stayed in touch throughout our stay in North Carolina, picking each other up when the other was down as only cancer moms can do. Robert put up an epic and rollercoaster fight for more than a year. What they went through is indescribable and hard to fathom. But they showed equally epic and indescribable strength through it all. We know Robert is at peace now, and no longer in pain. And we hope Kathryn and her family can somehow heal.

Thanks for checking in.

Kerri, Brian, and Spencer

Monday, November 22, 2004 1:25 AM CST

(All new photos in the photo album!)

Day 200

200...kind of has a ring to it. Spencer is doing well and had quite a lot of fun on his birthday. Thanks so much to everyone who wished him a Happy Birthday. It worked. It was a pretty mellow party, but that was good. Not only should Spencer not be around too many kids (cooties, you know), but he's been isolated for so long - over a year really - that he doesn't really have any friends left. Pretty sad, but we'll work on that. One friend Spencer does have is Tess. She came over and they went crazy. They really play well together. We had a bit of a NASCAR theme going, mostly the napkins and plates, plus the cake with the little cars of Spencer's favorite drivers. Fireman Mike and a couple friends came by with the pumper truck in the afternoon. That was great and Spencer and Tess had a great time putzing around in the cab pretending to drive the fire truck. Hopefully everything still works in there. Thanks Mike. And then Spencer's older friends Sean and Roxy came by late in the afternoon. So the playing kept going until probably 7:30 or so. As soon as everyone left Spencer konked out. He had a great time.

Speaking of NASCAR, today we watched the last race of the season, and it was pretty exciting. Not the preferred outcome, but pretty darn close. Unfortunately "close" wasn't quite good enough. Spencer (and our) favorite driver, Jimmie Johnson, came in second, but it wasn't quite enough to win the championship because his competition, Kurt Busch, finished 5th. So Jimmie lost the overall by 8 points - just a couple track positions - the closest season in NASCAR history. It was kind of a bummer because Jimmie had won 4 of the last 6 races, which is almost impossible nowadays, with a 6th and a 2nd in there too, just blowing away the field. Unfortunately Jimmie had a couple bad luck races early on. But the new point system still doesn't reward winning quite enough, so some boring consistent guy took the championship by a millimeter. Spencer is already moving on, like five minutes after the race was over, but the parents are still a bit bummed. Next year. Then we went to the beach.

So, pretty much activity for us the past few days. Stanford, birthday, big race, kind of more that we're used to. Now hopefully we'll mellow out and finally get into some sort of routine...maybe. Thanks again for wishing Spencer Happy Birthday and hope everybody has a Happy Thanksgiving.

Mom, Dad, and Spencer

Saturday, November 20, 2004 3:29 AM CST

Day 198

We just got back from a long day at Stanford for our first monthly check-up since being back from North Carolina. Overall things went really well. We hit it off with our new NP Lynn and Dr. Jeng. Spencer's port access went pretty well, but don't try to explain that to Spencer. The IVIG in the day hospital went well, as did the pentamadine. Everything else about the day was a bit chaotic, as expected. Mom had to take off mid-day to go talk to the hospital billing lady. If going through this type of experience isn't nightmarish enough in itself, then they have to go ahead and make you pay for it. The depths to which things get screwed-up in the process are unfathomable. Mom has spent countless hours trying to keep up and deal with this. Countless hours that she just doesn't have. Doesn't put you in a real good mood.

We also got to see some old friends. Kathy, who visited us so often at Stanford back in March, came by to deliver a birthday present for Spencer. That was so great. Thanks Kathy. And at the end of the day we met Ali and her mom Marey, plus her sister and brother. People from the ALL listserve will recognize those names. It's so rare to actually get to meet people in person that you chat with on the online ALL group, even though you get to know them so well because we are all sharing similar experiences and emotions. There is a huge bond there, and you can see that by checking the signatures in any caringbridge guestbook. Most of them are from other caringbridge families. It's kind of silly that we hadn't met Ali before since she is a patient at Stanford too. That was fun and we've got some photos to post from that, but Ali's got some up on her site already so click the link above.

Lastly, we'll be honest and say we were a bit creeped out by returning to Stanford. The reason is that the last time we were there, things were not going so well for us. A lot of scary memories were brought back to the surface. But it was nice to bring back a happy Spencer and it was especially satisfying to have so many people comment on how great he looks. We were also a bit apprehensive about possibly getting some attitude about how we yanked Spencer's care out of there so abruptly and headed off to Duke, mostly on our own volition. And yeah, there was some of that, but it was minor. Everyone who really got to know Spencer before was super great now.

And lastly, HAPPY BIRTHDAY SPENCER!!!!!!!!!!!!. The big 4 is here. We'll be having a low-key, somewhat racecar themed party at home with a couple of Spencer's friends, and the grandparents. And the Cambria firemen may stop by for some cake. Nothing big planned but it'll be Spencer's day to play as much or as little as he wants...kind of like every other day, but with cake and presents.

Thanks so much for stopping in and please send Spencer some happy birthday wishes in his guestbook. (And thanks to everyone who already did).

Mom, Dad, and Spencer Rocket

Wednesday, November 17, 2004 2:03 AM CST

Day 195

We're in sort of a split week, medically speaking for Spencer. Since our weekly pediatrician visits are Tuesdays, with port access on Mondays, but our Stanford appointment is on Friday we don't want things to be too redundant. So this week we went ahead with a port access Monday (which went well again and all the numbers are still great) but we had no pediatrician visit. Next week we wont do a port access but we will see the pediatrician. Sandwiched inbetween will be our Stanford visit when we do the whole shebang and then some. So we're rolling along.

Life is still a bit crazy, what with all the adjustments still going on...picking up our previous lives while still being in the medical world. There are still contstant phone calls and appointments being made for medical billing issues, doctors, schooling, you name it. Spencer even had a dental checkup on Monday where he got high praise for having no cavities and great mouthcare. The transplant at Duke actually really helped Spencer accept intense mouthcare. Normal good mouthcare - brushing two or three times a day followed by several flouride rinses was actually a big step down from the intensity of mouthcare during transplant. Seems like it worked, which is a big deal.

Transfering the physical therapy to California is proving to be a bear. Mommy even missed Spencer's swimming lesson today because of appointments concerning this and a dental appointment of her own. Spencer is being pretty active physically, but seeing him next to his old friends like Tess and Matt really highlights his physical weaknesses. He's getting there but he needs professional guidance to make sure he doesn't do permanent damage to his joints. Seems his hips are where the main issues are. We are really hoping that all this stuff will work itself out to the point we can get into a routine and get some more free time, catch up on some stuff, talk to our friends, etc..

But the really big news is NASCAR...the one thing we took home with us from North Carolina (besides Spencer's new bike and a pair of candlestick holders). Spencer's favorite driver is just ripping and Sunday is the last race of the year. Seems each race just gets more exciting and intense. Jimmie Johnson won again last week for the fourth time in the last five races. Unbelievable, and Spencer is just giddy. I'm not sure what Spencer's more excited about...his birthday on Saturday, or the final race of the season on Sunday. Okay, okay, it's the birthday. But funny as it may seem, we're into NASCAR and are really pulling for Jimmie to win the title. He's only 18 points behind going into this last race (which is about three positions in a single race), and Jeff Gordon is only 21 out - the closest NASCAR finale in their history. This whole racing thing, and what Hendrick Motorsports did for us, really helped us through transplant, and allowed us to focus on something quasi normal (although maybe not normal for a California beach family) through this whole experience. So watch the race on Sunday.

Next update after Stanford...or after Spencer's birthday...or after the race.

Thanks for stopping in.

Mom, Dad, and Spencer

Friday, November 12, 2004 2:05 AM CST

Day 190

Sorry for no update for a while, but there is a little thing called "work" that flares up once in a while. Christmas is our business' busiest season and November is when all the groundwork has to be laid for a smooth December. Got some of the big stuff finished today finally, so we can update.

The port access went great on Monday, first time. Spencer couldn't believe it was over so fast. It's one of those things where, if it goes well - it's great, if it doesn't - it really sucks. Maybe we're getting better at it. The labs came back great - platelets back up to 176 (thousand) and cruising. At Dr. Nave's appointment on Tuesday things went well and we proceeded with another steroid wean. He is now on a pretty minimal dose, which Dr. K has scheduled out for us to where if there are no issues the next wean will be in 4 weeks. The following wean will also be for 4 weeks and then it's zero. So here's to no issues and a smooth wean. Get rid of those steroids.

We are also set up for our trip to Stanford next Friday the 19th. Predictably they didn't even have us scheduled for a visit that day, but Mom got things ironed out. Spencer's got a new doctor and an new NP (Stacey, our old NP, quit to be with her new baby), and we're there on Friday when there's really no oncology kids at the clinic. So it's going to be a clean slate and quiet. However, it's going to be busy. We've got several appointments - clinic, day hospital, clerical, home health, bla bla bla, plus we're hoping to meet up with several of our old friends. I don't think there'll be enough time in the day to pull all of that stuff off. And we've got to scoot right home as Saturday is Spencer's birthday. Should be interesting.

Around home Spencer has a new preschool teacher lady, Nicole, who is coming three days a week, three hours a day to help Spencer with his development, and to have fun. We really like Nicole and Spencer really hit it off with her as well. This is going to be a huge thing for Rocket as well as for us. We're also lining up some home physical therapy for Spencer, probably a couple days a week. This has been pretty difficult to arrange apparently, but it looks like it's coming together now. Spencer's been doing really well and doing some good activities, but we really need a pro to make sure he is going in the right direction.

And, of course Spencer is continuing with his swimming lessons with Matt at Cuesta College on Tuesdays and Thursdays. So we're filling up his plate a little bit, but there's still been plenty of time for playing around the house and digging at the beach too, although it's been a bit cold and cloudy, which doesn't bother Specner in the least. Our friends Eric and Eliane came over last Sunday as well, with Tess (Spencer's girlfriend - sorry Matt) and her new little brother Owen. And boy did Spencer have a good time. Now he wants Tess to come over all the time, and he wants to take her to the beach and show her all the places he goes. Pretty funny. We still can't get over watching Spencer play with another kid. He's good at it...who knew? We get all goose-bumpy watching him eat it up.

That's about it. Good things are happening. Thanks so much for checking in, and hope everyone has a good weekend. Go dig some holes in the sand.

Mom, Dad, and Spencer

Sunday, November 7, 2004 2:09 AM CST

Day 185,

Spencer continues to do great. The best thing that we can report is that there is nothing to report. We've been busy beyond comprehension trying to take care of Spencer just the same as while we were in North Carolina, but with the added jobs of putting the home, business, and ourselves back together. We've got a long way to go but Mom has been doing great finding ways to unpack all our boxes that came from North Carolina, as well as purge some of Spencer's old stuff. We've got one heck of a garage sale supply.

Spencer is still on East Coast time, which is pretty nice. He's always been a stay-up-later-than-he-should kid, from day 1, but now he's falling asleep at 7:30 which gives us some time off of sorts. Of course he's up early too. We've been doing some of Spencer's favorite things, like digging at the beach, feeding Brandy some carrots, and playing playing playing around the house. Today Dad and Spencer hiked out to the point and found the monarch butterflies again. They've switched trees, but we found them. Spencer was very excited about that. We get struck by some deep thoughts once in a while when we find ourselves playing old games around here that we thought we'd forgotten about. It makes you want to stop and think about things... think about what we went through, about what others went through, what others are still going through, and what others will have to go through. Then you want to give Spencer a great big hug...but usually there's no time to get that far because we've gotta keep playing playing playing,..."Dad! Mom!, C'mon...let's race!" At least Spencer's adjusting nicely.

That's about it. Sunday's a race day, when we'll all be rooting for Jimmie Johnson to make it 4 in a row. Is that possible? Spencer's been running around the house all week saying, "I can't believe Jimmie Johnson won 3 races in a row!" (This is our North Carolina NASCAR fettish carrying over to California. We always like to take some of the culture home whenever we visit someplace.) Then Monday is already another port access day, followed by Tuesday pediatrician visit day. Funny that we go to the doctor on Tuesday, the same day we went in NC.

Thanks so much for checking in and we've all really enjoyed reading the guestbook posts lately. We truly appreciate all the love and support.

Mom, Dad, and Spencer

Tuesday, November 2, 2004 0:05 AM CST

Day 180

(NEW PHOTOS in the album! - 11/3/04)

SOMETHING GOOD THAT HAPPENED TODAY:
Day 180 Day 180 Day 180 Day 180 Day 180!

Yes, we are quite happy to report that day 180 has come (and almost gone). Big big transplant milestone. We're still not confident enough to run out naked in the street jumping and yelling and doing cartwheels, or to put up our giant banner on an aircraft carrier, but we are very happy about it nonetheless. Spencer is our hero.

Other than that little tidbit, Spencer had a great time trick or treating last night. He got, "the most candy ever in the world" - maybe 30 pieces. He is very proud of it, even though he'll probably only end up eating one or two pieces. He's not a candy guy. He just knows he's supposed to like it because that's what kids do.

His Cambria Fire costume was a huge hit at every house. People thought it was just the greatest...and it was. Huge huge props to Mike Gallagher and the Cambria Fire Dept. We are going to try to stop by the Fire Dept on Wednesday night while they are doing drills so we can do a group photo. Hope Spencer cooperates. I'll throw some Halloween photos up here soon.

Our friend Michelle, Spencer's adopted Auntie, was here this weekend. It was a lot of fun having her around. She helped out a lot and Spencer had a great time playing. She has Spencer energy. The parents do not. We hope she comes back soon.

Medically we accessed Spencer's port today and dropped the blood off locally in anticipation of our Pediatrician appointment Tuesday morning. The port access could have gone better, to say the least, but we were successful in the end. We hope to only improve from here. The port was very stingy and it took a couple trys and then several minutes to get enough blood for the tubes. Spencer wasn't too happy. The labwork came back this afternoon and it was a bit so-so. His platelets have dropped quite a bit, but nothing alarming. We've been told they'll go up an down so hopefully that's what it is and they'll go up again. We certainly just want everything to remain perfect because Duke is about 2670 miles away. And Spencer's GVHD skin rash remains about the same as when we left North Carolina.

Hope everybody had a Happy Halloween and thanks for helping us get through to this big 6 month milestone.

Kerri, Brian, and Spencer

Saturday, October 30, 2004 2:03 AM CDT

Day 177

It's official - Spencer is home! We landed in Santa Barbara Tuesday evening and spent the whole day there on Wednesday. We played in the hotel pool, went to the carousel, strolled the beach, ate at the Pizza Kitchen (of course), and then went home. It was bazaar how that made it feel like we were driving home to Cambria after a day trip to Santa Barbara, not 7 months in North Carolina for a transplant. I suppose that was part of the plan, to ease Spencer back to Cambria without a whole lot of hoopla that could possibly make him feel uncomfortable. And we think it worked, as Spencer did have some serious lingering apprehensions about going back to his house because of the 6.6 earthquake back in December, centered just 10 miles from the house. Remember that for us, in Cambria, time has been compressed. It's almost as if North Carolina was a time warp. We rocketed around the sun and landed back in Cambria just 24 hours after we left. For Spencer, December was just three months ago, which was the amount of time we were in Cambria before Spencer was wisked off to Stanford and then Duke. And at that time there were still numerous aftershocks - almost daily.

So when we got home on Wednesday night Spencer was pretty scared to go in the house. It was pretty sad. But once the sun came up the next morning, and Spencer discovered all his long-lost toys, he came out of his shell in a big way. The house was littered with toys within a half hour. Spencer was finally happy to be home. And he still is.

But the first day home was pretty hard. Calls had to be made to set up medical care and a dozen other things, the business had to be put back together, things had to be unpacked, the house had to be made Spencer-safe (which had already been 90 percent done thanks to Gramma Betty, Gramma Kristie, and Grampa Fred), etc. etc. And one major problem had to be fixed - the refrigerator was broken. Plus, with every newly discovered old toy, both Mom and Dad HAD to come play with Spencer. So Thursday was hard, but there's still a heck of a lot of catching up to do, with no time to do it. Partly there's no time to do it because Spencer comes first and the first day back we headed up to San Simeon cove for a long-delayed appointment for some digging in the sand. It was fun, but we kind of missed the warm summer weather. Where were we? I guess it wasn't a time warp after all.

Our priorities when we got home were (in no particular order), 1. Go to the "pretty beach", 2. Go visit Brandy the horse and give her some carrots, 3. Go play with Matt, and 4. Go down to the beach by the house to return our Cambria beach rock that we took to North Carolina with us, with a vow to put it back upon our return. Today we were getting ready to go see Brandy when who should knock at the door? Spencer's best buddy Matt. They went wild. It'd been way too long since Spencer actually played with a friend. They both charged upstairs to play in Spencer's room by themselves, leaving both Moms downstairs to talk peacefully. We've never experienced that before. Then later, Joe, Toni, Sean, and Roxy came by and everybody played out in the backyard. It was 7 months of isolation, then 2 hours of playing and visiting, and then it was quiet again. Bazaar again. Culture shock I guess.

Medically, we have a new pediatrician and we've arranged for our weekly checkups to be with her instead of up at Stanford. So we'll access Spencer's port here at home on Mondays and drop off labs locally, then Tuesday will be our pediatrician's office visit. Then once a month we'll go to Stanford for a checkup and IVIG and Pentamadine. We've also switched doctors up there. Since Spencer's no longer a frontline treatment leukemia patient, and his main tranplant doctor is in North Carolina, we are in a rather unique position. Spencer is now going to see Dr. Jeng, who saw Spencer a lot during reinduction last March and has a good relationship going about Spencer with Dr. K. Our clinic day at Stanford will be on Fridays. The good news about that is that Friday seems to be a very mellow clinic day in Clinic D at Stanford, but the bad news is it will be difficult to meet up with some of our old doctors, nurses, and friends up there. We'll figure that out in time. And our first appointment is on the 19th, the day before Spencer's birthday, so that should be a handful.

And lastly, we really want to sincerely thank everyone for the great outpouring of support that we've seen this week, from family and friends and everyone else. All the guestbook posts were a great surprise. Thanks to everyone, and we'll continue to update here as we settle back into our home. We're so happy to be able to share Spencer's great progress with everybody, but we also want to keep sending out good thoughts and prayers to all the other kids out there who are going through this with us. They have all been our lifeline - Andrew, Jared, Kendrie, Ian, Janvi, Annabelle, Robert, Chris, Leah, Isaiah, Alex, Aiden, Jhyrve, Chloe, Ali, and way too many others.

Wednesday, October 27, 2004 2:41 AM CDT

Day 174

(10/27 - New travel photos in the photo album!)

Rocket family launched towards West Coast at 2:20 PM today! It’s been exactly eight months since we got the call that Spencer had relapsed in his CNS. We have come so far since that day when our world fell apart. We got way to close to the abyss. But here we are
39,000 ft. over Prescott Arizona, not too far from the California border. Our flight was arranged by Corporate Angel Network and donated by Duke Energy. We even had had prawns and stuffed mushrooms and other tasty things for lunch! It’s so wonderful getting to go home – and in great style too! Thank you so much Duke Energy and Corporate Angel Network for flying us home!

We want to thank everyone for all the encouragement, love and support you have given us since Spencer relapsed in February. We read the notes in Spencer’s guestbook everyday and they have kept us going through some tough times. Thank you so much to everyone for the prayers and good thoughts – it worked!

It’s bittersweet to leave North Carolina. The care that Spencer received at Duke was as good as it gets. We are so grateful to Dr. Kurtzberg and everyone in the Pediatric Stem Cell Transplant Program at Duke. We arrived there in April dazed, scared and looking for a miracle and we are going home with one today. We made so many new friends and experienced so much kindness and generosity from the people we met there it was hard to leave. Definitely there is something special about southern hospitality. But the weather was getting chilly the last few weeks and the stories about ice storms and snow gave us the impetus we needed to get packing.

We had a great exit meeting with Dr. K and Barbara our NP yesterday. Spencer is doing very well. He has some mild skin GVH, which will clear up over time. We are treating it with topical creams and will continue to slowly wean the steroids. He is down to 1mg twice a day and we should be able to reduce that by half in the next few weeks and then wean to once a day for a few weeks before stopping them completely. We were able to reduce the Acyclovir (antiviral) dose by half yesterday. Hopefully over the next several months we will be able to wean some of the blood pressure meds as the steroid side effects begin to wear off.

The most recent data from the Duke protocols using unrelated cord blood transplant to treat ALL leukemia have not had any relapses after six months. It’s not a 100 percent guarantee, but in the world of leukemia and transplant it’s as good as you can hope for. We are taking a deep breath and our spirits have lifted so much lately as we have gotten closer to the 180 day milestone. Spencer’s 180 day test results have all looked great – 100 per cent donor cells (girlie blood, hopefully he will like to shop!), pulmonary function, echo and thyroid function all normal. His adrenal gland is not producing cortisol on it’s own yet, so we are supplementing with hydrocortisone three times a day until it starts functioning again, which will probably take about six months. Dr. Szabolcs ran Spencer’s immune function tests before we left and he is at about 25 percent of normal, which is on schedule for six months out from transplant with the immune-suppressant drugs he’s taking. We will be able to start weaning cyclosporine at nine months and if everything goes according to plan he will be off of immune-suppressants by one year post-transplant.

In the last month or so our future has begun to look so much brighter. It’s funny (not ha ha funny) how an experience like this puts things in perspective. We found out that the only thing that really mattered to us in this life is Spencer. When you go through something like this you learn what you are willing to give up to get your child’s health back; everything – take it, just fix our little boy. Countless times everyday, I give prayers of thanks for the miracle we have experienced watching Spencer’s return to health. His enthusiasm for life is contagious. He’s just so darn happy these days, feeling good and getting stronger with each day. We still have to be very careful for the next six months to protect Spencer from viruses and infections. We have a lot of doses of medications left to take, restrictions on where we can go and what we can do. He has to wear a mask when we are around more than a few people indoors. We have lots of physical therapy ahead to get his legs strong again. We know other treatment related issues will come up. But we can deal with all these things. We looked over the abyss and found out that these are the things we can handle. We’ll make some adjustments to our life and keep moving forward. As long as Spencer is a part of our life we can do anything!

The hardest thing for us now is seeing other families who are desperately in search of a miracle too. Their pain is close to our hearts. We need lots more miracles and a cure for childhood cancer. Please continue to pray for all the kids who are plugging away on treatment and all the children being treated at the Pediatric Stem Cell Transplant unit at Duke. Thank you to everyone who is helping raise money to find a cure for cancer. Thank you to everyone who takes the time to visit Caring Bridge sites and offer words of hope and encouragement to children and families who are fighting for their lives. Blessings to you all! We have finished another chapter on this journey and we’re ready to start a new one. Welcome home Spencer Rocket!

Love and good wishes to all,
Kerri, Brian and Spencer


SOMETHING GOOD THAT HAPPENED TODAY:
Well, besides having our feet back safely on the ground in rainy California! Special thanks to Kristie, who wrote a beautiful tribute to Spencer’s homecoming on Kendrie’s Caring Bridge site . If you haven’t been to Kendrie’s site you’ve got to check it out. She is such a cutie and has tons of personality too. And her mom just happens to have a wonderful gift with words. Kristie captures what the families who are dealing with childhood cancer are feeling in her journal entries so eloquently, always with compassion and a wonderful sense of humor. Thanks Kristie. Reading your entry was like having a welcome home party!

Tuesday, October 26, 2004 0:27 AM CDT

Day 173

First, check out something really cool: Kendrie's Site.

Thanks to Kendrie and family for that. That's great. Otherwise, we've had a couple crazy days getting ready to go home. Sunday was clinic day, which went well, and some wild and crazy packing. Our friend Alan White came up from Charlotte to help freight out all our boxes, and let me tell you, there were a lot of them. Just before we loaded Alan's van we were all excited to watch Jimmie Johnson, Spencer's favorite race car driver, win his second race in a row. But we were crushed beyond description to hear of the Hendrick Motorsports tragedy. We've never felt such emotional pain by something that happened to people we never even knew. But it was obvious to us when we visited Hendrick Motorsports that the whole organization was a big close family, and they do so much good in the community. Something like this is just unbelievable. We hope their pain will somehow ease a bit.

Then on Monday it was even crazier as we vacated the apartment, dumped the minivan, rented a car, donated a bunch of stuff, met Lisa for a last PT session including new orthotics for Spencer, and finally had our exit meeting with Barbara and Dr. K. I don't know how it all fit into place, but it did. Huge thanks to Kendi, Kerri's sister, for driving up from Florida to help. I'm sure she thought we were all a little bit crazy with all this stuff, but she'd be right, we are. We headed to Charlotte (where our flight goes out of) at nearly 10 PM and got here just before midnight.

We've still got some things to button up in the morning then we head to the airport. We're hoping the storm on the West Coast will slow down a tiny bit to allow us to sneak into Santa Barbara before the heavier rain starts. Looks like it's slowing down a bit now, so we want that to continue. Thanks to everyone for the great messages lately while we prepare to get home.

Mom, Dad, and Spencer Rocket

Friday, October 22, 2004 0:13 AM CDT

Day 169

(New Spencer photos in the album)

Things have gotten a bit too hectic to get to a complete update lately, but in a good way. It looked like we had a cool Corporate Angel Flight for Thursday the 28th non-stop from Charlotte to Monterey but it evaporated. Then, we got a call saying they had an even better flight from Charlotte to Santa Barbara, but it was on Tuesday the 26th (our clinic day). Long story short, we took it and now we have two days less to pack up and ship out. We rescheduled our last clinic day to Sunday and will have an exit meeting with Dr. K on Monday afternoon and we're outta here. Auntie Kendi is arriving from Florida on Thursday morning to help us pack the boatload of toys Spencer has, plus clean the apartment, which should be a huge help. Lots of work to do between now and then though. Hopefully Mom will be able to type a better update in there sometime.

Spencer's doing great, even snapping out of his naughty slump that he'd been in for several weeks. Happy, happy, happy. He's still a little sensitive about going home, not really wanting to for vairous reasons, but if we handle it right I don't think it'll be a problem. Who knows what sort of emotional state he's in after what he's been through.

Thanks so much for supporting Spencer through this time. We really do cherish all the great guestbook entries. And Spencer loves for us to read them to him so keep 'em comin'.

SOMETHING GOOD THAT HAPPENED TODAY:
We headed off for dinner at Maggiano's this evening to say goodbye to our friends there. What a surprise Spencer got when we showed up. Debbie and Chef Nancy, and maybe some others, went all out and gave Spencer the hugest present of all time - a huge remote control monster truck. You could imagine the glee on Spencer's face - a remote control monster truck. What is better than a remote control monster truck? If you're 3 going on 4...nothing. Not only that but the outside seating area was closed (but not for us) so Spencer had the whole area to careen his truck all over the place. Happy, happy, happy. And then they comped our meal. How do you say thanks to that?

Wednesday, October 20, 2004 0:36 AM CDT

Day 167

Another long Dr. K day down, one to go. Even if today's clinic day was long, it was productive. We did port access training, pulmonary funtion test, echocardiagram, and filled more tubes with Spencer's blood than you could shake a stick at for his 180 day studies. Larry from Duke Infusion, who was training Dad to access the port, did a serious double-take when the nurse wheeled in all the tubes for all the various tests. There were probably 15 or more.

So that's just the quickie update to let you know Spencer aced his tests and we are making progress towards heading home, possibly as soon as late next week. Mom is going to do a more detailed update on Wednesday when we will know more about our schedule. And she'll elaborate on our eventful clinic day, and of course, what a good boy Spencer was through it all. Stay tuned.

SOMETHING GOOD THAT HAPPENED TODAY:
In some sort of odd, full-circle type thing, we ran into Colin and his mom today at the clinic. Long-time readers may remember our chance meeting with them when we were freaking out back in April, doing work-up to transplant. Colin had T-cell ALL too, with a huge white count at diagnosis, CNS relapse, cord blood transplant, etc. etc. They were us. They gave us a good boost of confidence at the right time that we could do this, Spencer in particular. Now they are doing their 6 year post transplant tests, and doing great. Kerri and Colin's mom had a "there is life after transplant" talk.

Saturday, October 16, 2004 11:41 PM CDT

3Day 164

Spencer continues to look and feel great. We haven't been doing much but play around the apartment and take Spencer on afternoon bike rides. We have also been tinkering with cleaning and packing, but not too seriously yet. Spencer has been very energetic lately, which makes getting anything done pretty much impossible. We just get frustrated if we even try. Tonight we all watched the NASCAR race, which was very exciting (never thought I'd say that, but once you know what's going on it can be pretty intense). Spencer's favorite drivers finished 1-2 (Jimmie Johnson and Jeff Gordon), which is great because Jimmie's had some bad luck lately. Actually, Spencer got to meet his first real race car driver last week when Jeff Burton (#30 car) was at the clinic. He does a lot of work with Duke and we were happy he did well in the race, finishing 9th.

On the medical front, Spencer's GVH rash on his skin still comes and goes but this evening it was almost non-existent. Mom is keeping closer notes on when the rash comes and goes in case we can see any patterns. On thing is the weather has cooled off a lot, which could be helping. On Monday we start two days of testing for our 180 day studies. This time the studies were scheduled early to help out with getting home sooner rather than later. Monday is a CT scan, and Tuesday is the blood draws for the immune funtion tests, a pulmonary function test, and echocardiagram. We should also have some sort of exit meeting with Dr. K next week to go over Spencer's care once we get home. Dad was supposed to get trained to access Spencer's port this past week but unfortunately that didn't happen despite numerous pages and messages alerting the clinic that we still haven't been contacted by the people doing the training. Hope that doesn't turn into a problem.

That leads me into a sad note. Last time we were being trained by Duke Home Health we were being trained to do blood draws and give IV meds for when we were released from the hospital. We were trained along side with Robin because her son Ian was released at the same time Spencer was. Ian was doing so so well at that point but has since had just a terrible time and really needs a miracle. Please send your best wishes and prayers to Ian and Robin. Why one kid walks out of 5200 with a miracle while the another does not is inexplicable, and it's one of the biggest emotional burdens you have to come to grips with around here. It just sucks.

Thanks for checking on Spencer.

SOMETHING GOOD THAT HAPPENED TODAY:
I dont' know if this is good, or just plain sad. Spencer was playing with some marbles today, and when they were all clustered together in a pile he said they were all stuck waiting in line for the Pizza Kitchen (I guess it was crowded). Then one marble apparently got to go sit down inside the restaurant because he had "big blood", while another had to sit outside because he had "little blood". When we asked Spencer what that meant he explained that "big blood" was healthy blood and that person was allowed to be around other people, while the "little blood" marble had to stay away from everybody so he wouldn't get sick. Sheesh!

Oh, and here's another sad one (updated 10/17), October 14 was Mom and Dad's aniversary...we just remembered that today.

Wednesday, October 13, 2004 0:24 AM CDT

Day 160

Sorry for no updates this past week. It was because Dad bagged out to Cape Hatteras for some kiteboarding on Sunday and Monday. Our windsurfing friend from Charlotte, Alan White, came by Saturday afternoon and took Dad to the coast for a little break. We scored some great waves and good, albeit difficult wind conditions. And we saw some old friends and ate some rather suspect southern food. It was fun and it was the first time Dad had been in the water since March. Thanks Alan. (Oh, and thanks Syrus, Charlie from Ride Hatteras, and Trip from Real Kiteboarding for lending me some gear.) We had hoped that someone would be around to help Mom out with Spencer while Dad hit the coast but it didn't turn out that way. Fortunately Spencer has been doing so well that it wasn't a problem. What was a problem, however, for Mom, was Spencer's Jekyl and Hyde mood swings, which seemed to have really kicked in in the past month or so. He seems to be catching up on lost time for being a difficult three-year-old. It has concerned us somewhat because it is a definite change from his behavior a couple months ago, but so far everyone tells us it sounds like typical behavior. Mommy and Spencer got through their time together though, and now Dad is back to take some of the abuse.

Otherwise, today was our Dr. K clinic day and things went very well for the most part. Our nurse was able to get Spencer's port to work right away. She claims it is tilted a bit so the act of poking the needle into the port might need to be adjusted a bit. Worked for her. Then Spencer saw Lisa for some Physical Therapy. Spencer seemed to have leveled out as far as improving his strength, but we now think he is moving forward again. We are happy about that. Perhaps it was the swimming, which was great activity for him. Weather is getting a bit colder now so I don't know if we'll get any more pool time.

After PT we just played with play-doh while waiting for Dr. K, and Mary Margaret came in to play with Spencer for a bit. Then we saw Dr. K...about a 6 1/2 hour visit...way better than last week anyway. The big news is that all of Spencer's bloodwork is now officially in the normal range, including platelets. Hemoglobin was 12, white cells were 5.8 (a bit down) and platelets were 176. These are the best numbers we've seen for many many months. His chemistries were mostly normal too. The only issue is Spencer's rash. It is GVH but it's not too bad and Dr. K is not worried about it at all. It's mostly on his lower legs, but will climb up onto his thighs, tummy, arms and hands from time to time. It comes and goes from hour to hour at it's own whim. Bazaar. What's really bazaar is that it always seems to act up on Tuesday's during clinic day. We can't tell any correlation between the rash and the use of steroid creams, but it may react to temperature or humidity changes, or stress, like going to clinic for a port access. By the evening it was hard to see even on his lower legs. It's just little pimple sized red dots here and there, which don't bother Spencer in any way.

Dr. K is not worried about it, but she didn't wean any of our meds either. In fact, we started up the hydrocotisone again, which is the type of steroid naturally produced by your body. When Spencer's steroid dose gets low enough we start the hydrocortisone because Spencer is not producing enough on his own yet. It's a huge huge huge bummer because it's the one med that is 3 times per day instead of 2. That may not seem like such a big deal, but believe me, it is. Spencer's medicine-taking powers have decreased dramatically lately and it's often a huge struggle. At least with his steroid there are no side-effects like the predinsone causes (fluid retention, muscle weakness, mood swings, etc.).

Lastly, we talked about going home. We've got two more Dr. K clinic days. After the 26th we are free to go home, but exactly when we go depends entirely upon getting a Corporate Angel Network flight home, which is something we have no control over. In the meantime, Dad is going to get trained to access Spencer's port so we can do weekly lab draws at home. This will make things more comfortable for Spencer and will let us avoid going to our local hospital, which is not too set up for such things (we did that a couple times before and it didn't go well). The plan now is for weekly lab draws at home and seeing our new pediatrician, and only going to Stanford once a month for IVIG. Things could change, but that is the plan. Besides that we are thinking about how to get all our stuff home. We'll donate some stuff to the Family Support Program at Duke, and Mom found that the company we shipped our car over with has a different car shipment level that lets you pack your car with stuff. We have a minivan so we should be able to get a good 70 or 80 percent of our junk in there. Should be a busy couple weeks.

SOMETHING GOOD THAT HAPPENED TODAY:
Just want to throw in here that we'd really like to thank everyone who's been following Spencer's journey, sending prayers, signing the guestbook, sending cards, little presents, going to the blood drives, the Tahoe golf tournament, everything. Thanks again to Toni for helping with the business (and to Joe, Sean and Roxy for sharing her). Thanks to Treve for helping keep our plants and lawn alive at home. And super thanks to Alan White and all the windsurfers on rec.windsurfing who continue to show such great support for one of their fellow future windians. We don't get the opportunities that we'd like to thank everyone individually, but please know that we appreciate everything so much. We couldn't do it without you guys.

Thursday, October 7, 2004 0:52 AM CDT

Day 154

(All new photos in the photo album again.)

Tuesday was a rather frustrating clinic day to say the least. We got there about quarter after 10 in the morning, giving us 45 minutes to get Spencer's port accessed before we met Lisa for Physical Therapy in the gym. Well there were only two nurses on and they were slammed. We had to go PT before getting accessed. When we got back shortly after noon it took another hour to access the port...then...the port didn't work. We did another poke (which didn't make Spencer too happy). We put TPA in twice (an anti-clotting agent). We went down for a chest X-ray. We wiggled and squirmed, waved our arms, stood upsidedown, you name it. The port finally teased us with enough of a blood draw to get the required labs done, but by then it was after 5 PM. Seven hours and all we had done was a blood draw. Not good. So Dr. K and our NP Barbara came in anyway and gave Spencer the once-over, even though they had no lab results to look at. They said Spencer looks great and we went home, 8 hours after arrival. 8 hours (except the 1 hour of PT) in that little windowless, tv-less exam room.

Now the question is - why didn't the port work? And will things be the same next week? And the week after that? This was the third time the port had been accessed and the first two times went flawlessly. We had been hopefull that this port would work better than the nightmare port we had at Stanford. The plan is to be able to access the port and draw labs at home once we're back in Cambria on the weeks we don't go up to Stanford. If the port acts up like this at home...well...bummer. Worst of all, poking the port is still really traumatic for Spencer.

In better news, shortly after we got back to the apartment UPS arrived with a special delivery package from the Cambria Fire Department. I'm sure you noticed the new home photo. Needless to say Spencer cheered up immensely after opening that box of loot. Then we went out to dinner at Maggiano's with Gramma Kristie and Grampa Ernie. It was their last night here. The meal was great and the waitress Debbie STILL wouldn't let us pay for our meal. We though we had them that time for sure. Thanks Debbie. We needed a good end to the day.

Wednesday morning Barbara was finally able to fax a copy of Spencer's labs. Everything still looks great. The blood counts were actually a bit down across the board but we've seen that before when there were problems with getting a blood draw. The tons and tons of saline and heparin flushes can dilute the numbers. We're just crossing our fingers that the thing starts working again. Finally, we've got our 6 month studies scheduled for the third week in October, then we can try to pack up and go home. Should be a chore, but a happy one.

SOMETHING GOOD THAT HAPPENED TODAY:
After a late afternoon bike ride, Spencer got to go to a pumpkin patch and pick out a little pumpkin. We told him he could only get one little one because we're hopefull of getting a bigger one for carving once we get back to Cambria. But the experience kind of brought back some memories of going to the pumkin patch last year. Spencer spent 3 very sick weeks in the hospital after diagnosis last September. We got release for only one day before we had to be admitted for our next week long round of chemo, but on that one day we went to Half Moon Bay to the pumpkin patch to pick out a little pumpkin.

And congratulations to our friends Eric and Eliane Endersby back home in Cayucos on the birth of their new son, Owen. Their daughter Tess is Spencer's age and is about as cute as they come. Spencer's got dibs on her, right Eric?...Eric?

Monday, October 4, 2004 6:32 PM CDT

Day 152

Well we made it back from our trip to the mountains (Asheville) in one piece. We stayed two days longer than planed and actually salvaged the trip by staying - meaning we finally started having some fun. One of the highlights was hiking the Appalachian Trail....an entire 1.1 mile, or about 0.05 percent of it - 0.1 percent if you count the hike back to the car. It's a start. Kerri wants to section hike the thing at some point, but it might take a while.

The hotel we were at the last couple days had a nice warm indoor swimming pool and Spencer just went crazy about that. If he had his way we would have spent 12 hours a day in there. Unfortunately it was a weekend so we had to dodge the little girl birthday party and the teen thing, but we logged pretty much time in the pool. After two hours in the pool he still would have a tantrum about having to get out. Most of the day Saturday Dad and Spencer had fun in the pool while Mom went out relaxing.

And Sunday we went to the Biltmore Estate, which is like Hearst Castle East. Kind of hard to compare the two but both have the same theme - look at me and my money money money. They were having some Harvest Festival thing so Spencer got so see some guys shooting arrows, fencing, Irish dancing, stone carving, plate making, and other Old World things. It made for more things to see outside but we still had to dodge the people. Late in the afternoon the house (or giant castle as Spencer called it) was empty so Spencer got to go inside for a few minutes. The day was kind of a touristy sightseeing type deal but Spencer did really well.

Then we finally got to go back to the sanctity of our safe little apartment. Never thought we'd be so glad to get back to our little hidey-hole. The trip was stressful again, but Spencer is doing great. His rash is completely under control. His appetite was off most of the trip but now that we're home he's eating well (not surprising). And we're ready for our Dr K. clinic day tomorrow. We'll update after that. Thanks for stopping in. Spencer says "Hi".

SOMETHING GOOD THAT HAPPENED TODAY:
Last night while I was unpacking the car Spencer asked me if I would get something for him - his hairbrush.

Thursday, September 30, 2004 11:24 PM CDT

Day 148

Just a quick mid-week update. We had our Dr. K day on Tuesday and everything is great. Spencer had some rash flare-up over the previous week, while we were in Charlotte in fact. It coincided with a wean in the steroids but by the weekend it seemed to be subsiding (we were attacking it with steroidal creams). But by the time Dr. K got a look at it it really seemed to be going away. And now it looks great. But the steroids have stayed the same this week. Actually, both Dr. Sczabolcs and Dr. K are happy to see some rash because it means the graft is good and is hopefully working it's magic with the T-cell, and they are happy it is minor and not too much to worry about.

Other than that Spencer's labs are great, platelets holding steady at 146 (normal 150 to 400). Some of the 100 day immune studies are back. We don't have too much information but one number was lower than expected and one number was about or a bit higher than expected. Dr. Sczabolcs put his immune function at about 10 percent at the time of the test, which was at least 5 weeks ago. Lower than expected, but he wasn't worried about that and it should be higher now. We're looking for 30-40 percent at the 6 month tests, 60-80 percent at the 9 month tests, and 90 at the one year mark.

And Spencer's Gramma Kristie and Grampa Ernie are here and we've had a long-planned trip to Asheville (in the NC mountains) planned. The Charlotte trip was originally supposed to be tacked on to the beginning of the Asheville trip but we decided that would be pushing it too much for Spencer so we made Charlotte a separate trip last week, kind of a test run. So we took Spencer to clinic super early (for us) on Tuesday so we could get to Asheville before dark, which we did. That was great but so far things have deteriorated from there (this update is coming from Asheville). Horror of horrors, Gramma Kristie said yesterday (Wednesday) that she felt funny and may be getting sick. Well, we obviously took no chances and separated immediately. Now we are by ourselves in this 3 bedroom cabin for two nights, and they are somewhere else in town. And today we did separate things. But sure enough, when Kristie woke up in the morning, she had a cold. Fortunately Gramma Kristie has been very diligent washing her hands and with everything hygene when she's has been around Spencer, and she said something the instant she even remotely felt strange. For now the rest of us are healthy and we are really crossing our fingers. And thank goodness we took separate cars.

Another thing that we've noticed is that our schedule over the past year of caring for first a cancer patient, and now a transplant patient, doesn't fit in with the schedule of normal society. And, in the interest of patient care, there's nothing that we're going to do about it. We just take longer to do everything and that's that. And there's the things that we know are different for us - like where we can eat, when we can eat, what we can eat...where we can go, when we can go...what we can do and when we can do it...or the things we can't eat, go or do. So, from a normal person's perspective, which we've been trying on lately, this trip to the mountains has been somewhat of a disaster so far. With what we've been through, you wouldn't think we'd stress about all the normal "little" stresses that come with a simple three day vacation, but we do. And we get to pile our medical stresses on top of that. Plus, ever since Spencer's steroids switched from IV Solumedrol to oral Orapred, he's been really moody, from super sweet to downright mean. So, overall, we could be having a bit better time than we are, to put it nicely. I think we'll all be happy to get back to Durham. And that'll be pretty much it with little trips to unknown places.

SOMETHING GOOD THAT HAPPENED TODAY:
Hands down, the good thing that happened was that Spencer missed that darn earthquake back in California. He remembers the one in December vividly, and even mentions that he's going to stay here in North Carolina because his house shakes (even though he misses it). If he had been there for this latest earthquake...well, we're not even going to go there. We missed it, and thank goodness for that.

Sunday, September 26, 2004 1:25 AM CDT

Day 143

Well, on Friday we tried to outrun all our troubles, kind of put things behind us. To do that we would have to go fast...really fast....say something like 160 plus miles an hour in an authentic NASCAR race car at Lowe's Motor Speedway in Charlotte, NC. We've really outdone outselves now. But first we'll back up a bit.

Long-time Spencer fans may remember when the Hendrick Motorsports pit crew guys came buy the hospital to stoke up the patients, as they do a couple times a year. We had just been released from 5200 and saw a couple guys in clinic. They gave Spencer a hat and a fancy die-cast Jeff Gordon Elmo car. Spencer was kind of getting into race cars at that point (Dad too), but that was it. Well, we are in North Carolina after all, home to NASCAR. Hendrick does this as part of Hendrick Marrow, a program dedicated to increasing the bone marrow donor registry. Rick Hendrick started the program after he received a bone marrow transplant for AML, during which he realized the great need to expand the registry.

So, our social worker Marrian, put us in touch with Courtney, the program coordinator, who arranged for Spencer to have a VIP tour of Hendrick Motorsports. Off we went on Thursday to Charlotte, North Carolina, which is a little over 2 hours away, thus breaking our previous outing record of 1 1/2 hours when we went to Spencer. But this time we really went big-time because we stayed overnight. Getting a little zany.

The tour was absolutely fantastic and incredibly impressive. Courtney was a super tour guide and Spencer immediately put her down as her #4 girlfriend behind Mommy, his primary nurse Andria, and Yeni from Stanford. By the time the tour was over Spencer bumped her up to #3 (Sorry Yeni, you know those long-distance relationships.) We got the VIP tour of Jeff Gordon (4 time NASCAR champion) Motorsports, where they build the #24 and #48 cars. Then we saw the Terry Labonte (2 time NASCAR champion) #5 garage, and the #25 Brian Vickers garage. Spencer's favorite driver is Jimmie Johnson in the #48 car so he was just in shock. We even got to see the top secret Spongebob #48 car that Jimmie will use in the race at Charlotte on October 15, the date that coincides with the release of the new Spongebob movie. But, shhhhhh, it's a secret. It was just so cool that I can't say any more about it. You have to see for yourself on Spencer's Site.

The next day we even got zanier. Our windsurfing friend Alan White, who did the Hendrick tour with us too, took us to the speedway in the morning and treated us to the Richard Petty Experience. Spencer got to see some of his favorite cars blasting around the track and Mommy and Daddy, plus Alan and Grampa Ernie and Gramma Kristie got to ride in the cars 3 times around the track at over 160 mph. All we could say after that was, "....Oh.....My...God!" We're kind of new at this racing stuff but there is no way you can ever even remotely appreciate what's going on for those race car drivers if you don't get in one and do it. Amazing. You've got to do it.

After that we went with Alan to downtown Charlotte and ate and cruised around and popped in Discovery Place with Spencer, which has a bunch of science stuff that kids like...a little dinosaur display, an aquarium, a tropical rainforest, and tons of nature and science displays. It was very uncrowded and Spencer wore his mask and gloves but it was still very unnerving. It was great to see Spencer having a good time and being interested in stuff, but truthfully, the parents couldn't wait to get the heck out of there. Maybe a little early for that kind of stuff for both Spencer and Mom and Dad. Actually, the whole two days was kind of nerveracking. You really lose your comfort-zone when you can't just pop back to the apartment at any time. We were constantly paranoid about Spencer - where he was going, what he was eating, what he was touching, what people were around, looking and listening for coughing and sneezing, looking for kids with runny noses, washing hands, changing clothes. We're ruined. Will this paranoia ever go away? I sure hope so because it sucks.

Now we're back home at the apartment hoping we pulled it all off. And we're waiting for Jeanne to come through, happy again that we're not in Florida. We'd just like to send a huge thank you to Courtney and everyone at Hendrick Motorsports for a very special experience, and to Alan White for all he's done. And thanks to everyone for checking in on Spencer. Sorry it's taken a bit to update, but as you can see we've been busy.

SOMETHING GOOD THAT HAPPENED TODAY:
Every once in a while we put some links down here to some kids who need some extra prayers because they're having a rough go. One of those kids was our friend Ben Murphy, who relapsed 14 months post-transplant and was facing a second transplant (not a good thing). Well Ben got into remmission and had his second transplant almost a month ago. He blazed through transplant and is doing very well, and is going to be discharged this week. Obviously he has a long way to go, but this is good news that I thought we'd share. Good job Ben!

Monday, September 20, 2004 1:02 AM CDT

Day 137

Sneak Peak at the next update!!!

All New Photos in the Photo Album!

Something unusual happened today - the sun was out, all day, not a cloud in the sky, low humidity...Fall weather. It was very nice and we had a nice day. We watched our race favorites have mediocre days in the NASCAR race then we took off for some adventures. We dropped Mom off at the mall to take some stuff back while Spencer and Dad went to watch airplanes takeoff and land at the airport. Most exciting thing was seeing the damage from the microburst they had at the airport last Friday when Ivan went through, including bent signs, snapped trees, and four little airplanes that were flipped upsidedown and squished right in front of the observation platform. A little unsettling. (Actually, a funnel cloud was spotted about a mile from our apartment on Friday too.)

Then we picked up Mom and went for the big event. But first a little background: We haven't been doing much because of all the rain, and the surgery last Monday, but Spencer's been making good progress at physical therapy with Lisa. And lately we've been able to do the sessions in the gym in the main hospital. He goes nuts on the little tiny trampoline and on the big tricycle. We've been talking about getting him on a tricycle for some excercise and therapy for a while but he only seems ready for it now. So we finally decided to commit and buy one...but, Spencer doesn't want a tricycle. He only wants a bike. Okay, fine. Don't argue with at 3 year-old. So on Saturday we bought him a nice little bike that should last him a couple years. And now back to our story:

So we zip over to the bike path (part of the American Tabacco Trail) that goes by the mall for Spencer's maiden voyage on his bike. Spencer rode a bike in Lisa Wan's driveway (where we stayed while at Stanford) once or twice back in March but only went about 80 feet total and couldn't steer or pedal. Today we strapped on his helmet, put him on the bike, tried to mention something about the brakes, and he took off - end of bike riding lesson. He had a great time and ended up riding a good 1 1/2 miles. Half way through he was even trying to do skids (pretty weak ones). We couldn't believe what a pro he was, nor could we stop smiling for quite some time. And it should be the greatest thing for getting him some exercise. This really made us feel like we have turned the corner with this stuff and are giving Spencer a peek at a more normal life. We felt like calling Dr. K right then to tell her what a gift she has given us. I don't think we had her number, though. We've already told her anyway.

The other huge huge news that we haven't mentioned is Spencer's potty training, which was a couple weeks ago but went about like the bike ride. Spencer was just getting potty trained when he was diagnosed last September - setback, then he was just starting on it again when he relapsed in February -setback, and now it's finally for real. Actually, having him in diapers has made things a lot easier through transplant, but it was time. So one day we stuck some cute Thomas underwear on him, he had one minor peepee accident, and it was done. Now he just does the whole thing by himself, except for turning the faucet on to wash his hands because he can't reach it. And he needs help getting up on the potty for number 2. But it's not a problem and he's a big boy now. (But we still need diapers when we go out and about because Spencer can't use public restrooms.)

So that's it, still a long way to go but we're working on normal stuff as much as we can. Looks like some very nice weather in store this week so we'll try to keep it up. Thanks so much for checking in and hope everybody had a great weekend.

SOMETHING GOOD THAT HAPPENED TODAY:
Well, I think I covered that already, but here's some more Spencerisms:
Now that Spencer is potty trained we now have to deal with part grabbing. I suppose that's a normal thing...isn't it? We asked Spencer why he was holding onto his parts and he said, "Because they're hidden treasure." No way did he get that from us.

And here is Spencer's latest original song:
"One time there was a fish swimming.
One time there was a race car swimming.
One time there was a plane flying over."
And apparently that was it.

Tuesday, September 14, 2004 11:43 PM CDT

Day 132

The story today is Spencer rebounding from Monday's surgery. We kind of figured he'd be pretty bummed for 3 to 4 days post surgery, what with removing two catheters and placing a port and all. The port is located on his left side under his arm just above tummy level (kind of wierd) and the catheter is tunneled under the skin all the way up to the collarbone then over into a big vein that enters the heart on his right side, so a lot of burrowing went on. And from my experience in getting a catheter placed, it is sore, very sore, for a few days. Well what a wimp am I? Spencer was bright eyed and bushy tailed all day long, going and going, no nap, just blab blab blab play play play. He does say he's a bit sore and is physically restricted a bit but you'd really never know. He did konk out early though. And he had a huge huge nap yesterday afternoon. Good job Spencer. We wont be accessing his port until next Tuesday but the surgeon said it works well.

And today was a Dr. K clinic day. It wasn't as long as last week and some things broke it up like Spencer getting to play with Mary Margaret, Andria (our primary nurse on 5200) stopping by to say hi, and Mom taking a survey on the stresses of transplant on caregivers (who better to take that than Mom?). Then Dr. K gave Spencer the once over and we left, all told about a 4 1/2 hour deal. And Spencer is doing great, counts are back up, rash is under control, oral meds are going down no problem, and it's raining again, with the promise of it sticking around a while. What's new? At least we're not in New Orleans. They should be scared, very scared.

So life remains boring, which is the best news we can ask for. Unfortunately Spencer's transplant buddy, Jared, and his mom Lynn (who are our sole source of social interaction, plus they're fun) are going home to Florida on Saturday. We are happy and sad. Best wishes to them as they change lattitudes.

And finally (as Jay Leno says), this past weekend the "Best of Golf" tournament was held in Lake Tahoe. This is an annual benefit golf tournament held by the Lahontan Community Foudation. This year the tournament was dedicated to Remy Zerber and Spencer Rocket Caserio, two kids with life-threatening illnesses. A portion of the proceeds are donated to Remy's and Spencer's charity of choice. Remy is being treated at Stanford so her proceeds are going to LPCH and Spencer's are going to (big breath) - the Duke University Medical Center's Pediatric Blood and Marrow Family Support Program, which is a wonderful donation supported program here at Duke. Apparently the weather was beautiful and 60 to 70 people participated, so things were a rousing success. We don't know how much was raised but we'll let you know. Thanks to the Lahonton Community Board for doing all this. Best of all, everybody had a lot of fun. That's the way to do a charity event.

Thanks so much for stopping by and please remember to sign Spencer's guestbook, especially after Saturday when Jared and Lynn go home (or as Spencer calls them, Lared and Jynn).

And please send good thoughts and prayers to Sir Ian.

SOMETHING GOOD THAT HAPPENED TODAY:
Tonight when I put Spencer to bed he was totally out, but when I was just walking out of the bedroom I heard this faint, "daddy". I went back over and snuggled up and he said, "Daddy, I want to go home. I miss my house. And I want to see Brandy (Grampa Ernie's horse). And I miss the pretty beach (San Simeon Cove). " He was using such a cute soft whisper that I almost started crying, but I almost started laughing when he said, "And I'm being patient." Of course I couldn't praise him enough. Then I told him there were only 6 more Dr. K days left and we'd be home. He said he could do 2 more and that's it.

Friday, September 10, 2004 2:36 PM CDT

Day 128

(Day 131 Interim Update: We somehow got out of bed at 6:30 this morning and headed off for Spencer's line surgery. I can't describe what a brave boy he has become. I was worried he wouldn't get out of bed but he jumped up and said, "I've got to go get my line out." And he continued to impress the rest of the day. The surgery went very well. He was in a bit of screaming pain in the recovery room but calmed down after half an hour or so. He's very sore now but he is also upbeat and handling it like a Spencer Rocket. He says he's a little bit sore, but doesn't need the tylenol because he's brave and it's getting better. Tough guy. More update after Dr. K day tomorrow.)

Back to the old update:

Just throwing in a quick mid-day update. Spencer and Mom just headed off to the clinic for a simple blood pressure check (just to watch it as we recently weaned some more bp medicine) so there is time to sit unmolested at the computer.

So Tuesday Spencer's counts indicated some potential GVH issues, plus he had some rash. Dr. K wasn't concerned with the rash but she was concerned about stopping his counts from falling further. Spencer's steroid dose was increase by a factor of 6 (but still a relatively small dose) and we attacked the rash on all fronts with steroidal creams, four times per day. If Spencer's counts didn't show some improvement we were going to have to cancel his line removal/port placement surgery scheduled for Monday, plus go to some more serious meds (not to say the one's we're on now aren't serious already, but it seems you can always go up a notch).

Well we got the lab results back today from Friday's blood draw and it would seem Spencer took that linebacker sized frame of his and squashed our potential bump in the road like a helpless little bug. His white count jumped from 3.5 to 6.2, hemoglobin was back up to 11, and platelets leapt from 86 to almost an almost normal number of 143, the highest it's been since transplant. Even our NP Barbara was shocked at the level of improvement. Plus the rash is nearly completely gone. Shows what you can do when you catch things early. I'm embarrassed to have even called it a bump in the road now. But I believe I called it a "possible" bump. Surgery is still on for Monday.

Now we'll have to see how to continue the steroid wean. It'll probably be slower. And unfortunately the steroids are going to have to switch from IV to oral once the external Hickman catheter is gone. Spencer is not going to like that, but Daddy is not going to like that even more I think. Spencer is showing signs of reverting back to a reluctant oral medicine taker. We had a good run of the perfect child though.

That's about all that's going on. We've slacked off on our outings lately. I don't know why. It had been raining a lot but now the weather is beautiful. We'll probably try to do something here pretty soon. We've got a VIP tour of the Hendrick Motorsports facility in Charlotte lined up for the end of the month. Spencer should see some cool stuff there. The Hendrick team consists of, among others, Jeff Gordon, Jimmie Johnson, Brian Vickers, Terry Labonte, etc. etc., so some of Spencer's favorite race car drivers. And Spencer says he wants to go back to Spencer. We'll see about that, but the Richard Petty racing museum is on the way to Spencer. Could be race car overload though.

Thanks for checking in, and one of Spencer's transplant buddies has been having a tough time lately but might be getting more stable. Any extra thoughts and prayers could be usefull for Sir Ian.

SOMETHING GOOD THAT HAPPENED TODAY:
I'm going to throw something more permanent in the top portion of the page soon, but a huge huge thanks goes out to our friend and fellow windsurfer Alan White from Charlotte, NC (maybe we'll see him when we go to the Hendrick place), who rallied the online windsurfing discussion group rec.windsurfing to raise some money for us. I know we've been pretty deeply entrenched in the windsurfing business and community, which is pretty tiny, for over twenty years but it has been truly heartening to see the rally they put on for us, most of whom we've never met. In just a couple weeks Alan sent us enough from the rec.dotters for us to pay our last two months of rent. And since our cash reserves were just about dry it was just a huge huge thing. I honestly didn't know how we were going to pay rent plus move all our stuff back to California (and our car). And this has been the only benefit type thing anyone has done for us so, wow, huge thanks. The kindness of others is what gets people through tough times.

Tuesday, September 7, 2004 10:18 PM CDT

Day 125

From the moment we stepped off the plane at RDU to serve our time here at Duke we've done nothing but go forward. Today we had our first tinsy steps backwards, and hopefully we're on our way forward again. But first - holy long Dr. K day today Batman. We have been really lucky lately with some quick clinic days. Payback today. We (mostly Mom and Spencer) were there for about 7 hours, which isn't super extreme, but the clincher was that we were holed up in the windowless 10 by 10 room for about 4 1/2 hours.

Since Spencer's IVIG is now only once a month we no longer have to go to the day hospital, where they have the brighter airy rooms with TV and VCR, plus Mary Margaret comes in to play. This means we don't have anything to do, medically, while we wait for Dr. K. But we're still in isolation so they have to put us in a little exam room (aka waiting room,
aka waaaaaaiiiiiiiiiiiiitttttttttttiiiiiiiinnnnnnnngggggggg room), and we can't leave. So that sucked. It's like some med-school toddler behavior experiment gone horribly wrong - "Let's lock the parents and their three year old in this tiny windowless room for a while and see what happens." The results are not pretty. But Spencer's a great kid and he got through it fine. The same cannot be said for the parents, especially Mommy. Dad managed to only catch the last couple hours.

So the bad news is that Spencer's counts have dropped over the last week. You might remember a little over a week ago we expected all of Spencer's blood counts to enter the normal range soon for the first time in over a year. Well I shouldn't have said that. Platelets dropped from 130 (150 is the low end of normal) to 86, white count went from around 7 to 3.5, and hemoglobin went from the 12s down to 10.5. And Spencer has shown signs of some rashiness. Dr. K made us promise not to freak out about this because in the grand scheme of things this so far is minor. It looks like some GVHD (graft vs. host disease) is popping up, probably because Spencer's steroid dose has been weaned down so low. It's during the wean when things can pop up. In fact this was our second to last step to eliminating the steroids altogether, a 1ml per day dose. End result is that we went backwards with the steroid dose back up to 3 ml twice a day (6ml total). This is not a huge increase but does mean that in the best case scenario Spencer will be on steroids an extra month or two. Now we have to see what happens and start weaning from that level again. We also have to apply steroidal creams 4 times per day.

Spencer got his IV steroid dose in the clinic and by the time we got back to the apartment less than an hour later the rash was pretty much gone, so that was good news. The more important test will come Friday when we draw labs again. This all comes when we are preparing to remove Spencer's Hickman catheter and replace it with an under the skin mediport. We have a pre-op appointment in the morning with surgery scheduled on Monday. If Spencer's counts improve by Friday we will proceed with the surgery, but if they continue to fall we will have to cancel it.

Just when we were beginning to think that maybe we wouldn't hit any bumps at all, not that we're freaking out or anything...see?...we're fine.

Of course you can't tell any of this by looking at Spencer (okay, maybe if you see the rash). He is happy as a clam, bouncing off the walls all day long. We just got the 100 day happy test results back and he is officially as happy as he was before diagnosis last September, just giggling all day. Poor old parents that we are, we have to ask how anyone can be that happy. Oh, to be three years old again. That's about it. Thanks for taking time out and checking in on Spencer.

Secret Link

SOMETHING GOOD THAT HAPPENED TODAY:
Now it seems that Spencer has taken up song-writing. Well, maybe he's not writing it down quite yet, but he's making them up. He came over the other day and told us he wanted to sing us his very first original Spencer song. This is it: a one, a two, a one two three -

I love my Mommy.
And Daddy is kiteboarding.
And Mommy isn't a T-Rex.

Wednesday, September 1, 2004 7:16 PM CDT

Day 119

Tomorrow is our one year anniversary of Spencer’s diagnosis. I guess you could say we’ve been doing a lot of reflecting the past couple of weeks. What a year. As bad as it was getting the initial news of the leukemia diagnosis on September 2nd we never would have believed how the rest of the year was going to unfold. And here we are living in N. Carolina for five months already! Relapse was a rude shock (to say the least), but Spencer is doing so well post-transplant that lately we are starting to realize that there’s an upside to transplant – no more chemo!

So much of the last year is a blur – a jumble of hospital stays and clinic visits, two weeks of radiation appointments, tests, meds, dressing changes and daily central line care. No wonder it’s a blur… I think we’ve been feeling numb. Up until very recently we didn’t allow ourselves to think too much because it was just too overwhelming and scary. I was thinking about it this morning - we spent over 30 percent of the days the past year inpatient in the hospital. Good grief! Factor in all the hours in the day hospital and the clinic and no wonder we were numb. Marilyn, the chaplain at LPCH wrote to me that we had lived a decade in the last year and I think that is the perfect way to describe it. (A hard decade to boot!) I know I’m a lot grayer and Brian is a little thinner on top anyway!

The funny thing is how clearly I can remember so many of the days last summer leading up to Spencer’s diagnosis. The things we did, specific conversations with people, the doctor visits where Spencer’s symptoms were dismissed as no big deal – take some antibiotics and call me next week. And then the same thing the following week, except that one week later he was so sick that he needed to be airlifted to LPCH as soon as he could be stabilized. He was so sick, we spent that first week not knowing which way it was going to go. Fortunately, he responded well to the chemo and his WBC dropped from a high of over 400k to being in complete remission by day 21 (which is the first BMA they do after diagnosis on the protocol Spencer was on). Everything went great until that call on the afternoon of February 26th, when they told us they had found leukemia cells in Spencer’s spinal fluid during a scheduled LP.

Brian answered the phone and I was watching him confused by his facial expressions. Then I realized what was the only thing that someone could say that could make him look that horrified and completely devastated. We both huddled in a state of shock for a while, crying, too afraid to talk. We sat and watched Spencer sleeping peacefully on the couch, scared out of our minds, terrified of the future and what we were going to have to put him through. Fortunately, we didn’t get stuck in the paralysis long. I made some calls and thanks to some incredible families on the ALL-KIDS List, an online support group through ACOR for families dealing with pediatric leukemia, I was able to get in touch with some of the best pediatric transplant doctors in the country. But it only took one conversation with Dr. Kurtzberg at Duke the next day (Friday) and we knew that she was the best doctor in the country to get Spencer cured. She was knowledgeable, hopeful and she had a bunch of helpful information delivered to us the next day FedEx, Saturday delivery. We were impressed. We hadn’t experienced that level of access and follow up in Spencer’s treatment up to that point. When she said to give her a call and let her know how Spencer was doing no matter what we decided to do – I knew she was the right doctor.

Re-induction at LPCH was a nightmare, but once we got to Duke we’ve never looked back. The care here has been absolutely the best available. Being a Phase I treatment center they have access to the newest medicines and technology. And then there is Dr. K. She is so committed to her work and all the kids here. She’s always accessible. Her experience and knowledge are simply amazing on so many levels. All the doctors in the PBMT Unit here have been wonderful, as well as the nursing staff. So here we are one year from diagnosis, four months out from transplant, starting to look at life as full of possibilities and hope for the future again. THANK YOU Dr. K and all the doctors and nurses in the PBMT Unit – you rock!

We are starting to make plans and arrangements for heading back to California in late October. Spencer wants to be a firefighter for Halloween – he’s got some local heroes he looks up to at the Cambria Fire Dept. and there was no hesitation on his part when we asked him what he wanted to dress up as. Capt. Mike is putting together an authentic Cambria firefighter uniform for him. We are going to get a fresh start with a new pediatrician (Thanks Marna!) back home that is enthusiastic about working with Dr. K to get Spencer healthy again.

Secret Link

Which brings me to…Spencer is doing great! Yesterday was our weekly clinic visit with Dr. K and she went over all of his 100 day tests. Drum roll please…all of the tests came back NORMAL! (Well except for his cortisol level, which was low from all the steroids. Dr. K had warned us to expect that, and it just means taking hydrocortisone for a few months until the adrenal glands “wake up” and start producing cortisol again. (Easy for me to say, but for Spencer it’s another yucky tasting med three times a day.) His echocardiogram – normal, pulmonary function – normal, lungs – clear and bone density appears normal. So far his thyroid is functioning normally and there is no sign of any injury (white matter) in the brain from the radiation. His labs are normal, other than platelets, which are still a little low, but increasing steadily. The best news of all is he’s 100 per cent donor cells – or “girlie blood” as we like to call it! Which may explain his fascination with playing store and shopping and cooking (sorry Emeril). Wouldn’t that be cool if mommy had someone to go shopping with? (You know it won’t be daddy!)

After telling Dr. K about Spencer’s last bath – wallowing in the water and blowing bubbles like an elephant seal, (which he’s said he wants to be when he grows up) – she decided it’s time to get his two external Hickman catheters removed and replace them with an under the skin medi-port. I asked when we might be able to go swimming in a well-chlorinated pool again and almost fell off my chair when she said five days after getting his port. Yippppeee! Spencer has always loved playing in the pool. Another step closer to a normal life! Whatever that is…

So life is going along and getting better everyday. As hectic as it can be for people who spend almost all of their time confined in a space under 1000 sq. ft. We just follow him around and bulldoze the debris left behind by hurricane Spencer a couple of times a day. He has a new buddy, Kakky, who comes and plays trains and cars and trucks and tractors and indoor T-ball and store and whatever else he dreams up. She’s wonderful with Spencer and it’s so nice for Brian and I to have a moment to try to catch up. How’d you think I was finding time to write this in the middle of the day! (Have you noticed the time of day of most of the updates Brian writes?) Next on my list is catching up with thank you notes – don’t give up – they’re coming soon!

My parents are coming out to the East Coast in late September and we are going to have our first big outing - two nights in a nice cabin in Asheville near Great Smokey Mountains National Park. And then if all is going well we are off to visit my sister and family in Winter Park Florida. Dr. K said we could go as long as we PROMISED to stay away from Disneyworld, etc. No problem! We’re just going to take their boat out and look for alligators in the lake they live on! That is if there’s anything left after Hurricane Frances, which is headed their way. Kim, a friend of mine whose son Andrew was diagnosed just before Spencer with T-ALL, said tongue in cheek last week, it looks kind of like we are on a family vacation these days. Heck yeah, dinners out on restaurant patios, peddle-paddle boats, carousels, trains, miniature golf, mountains, alligators – we’re living again!

Ha! One year – what were you expecting? You knew I was going to go getting sentimental and philosophical on y’all! Thank you all for your support and kindness and especially the good thoughts and prayers. We know we still have a ways to go. We’re still under a lot of heavy restrictions and have to be really careful. We’re trying to get creative with our isolation. Spencer is likely going to have some challenges to deal with, but we’re feeling good. Spencer’s happy and we’re full of hope that the next year is going to be a lot better than the last one.

SOMETHING GOOD THAT HAPPENED TODAY:

Kakky was here. I did something. Well I wrote something. OK it wasn’t thank you notes, but it was something! And we’ve got a few new Spencerisms for you…

1.My personal favorite – “earlisteners” (a.k.a. headphones)

2.”Mommy why are you drawing on your face?”

3.”You guys are breaking records talking too much.” (Spencer showing the effects of watching the Olympics. And said on a night out for one of our late-shift patio restaurant dinners with Jared’s family. Granted we WERE all talking at once!)

Best wishes to everyone,
Love,
Kerri, Brian and Spencer Rocket


Update - we are very sad and shaken to pass along word that Spencer's transplant next door neighbor in 5200, Folden and his family lost lost their fight with leukemia this morning. This world can really suck sometimes.

Friday, August 27, 2004 0:36 AM CDT

Day 113

(Need to smile? Watch for the secret link.)

The rest of Spencer's 100 day tests went off without a hitch. Some of the results come back very quickly, and others take weeks. First, the CT scan came back clear, which I think we expected. A CT scan at Stanford in February showed unidentified spots on Spencer's lungs. Dr. K, having seen it all, assumed this to be a possible fungal infection, which is a very very serious thing to have going into tranplant. She prescribed voriconazole immediately and Spencer's been on it ever since, and probably will be for several more months. However, a scan at Duke immediately pre-tranplant was clear and Spencer has shown no further problems with this. We won't have to do any more CT scans.

Also, Spencer's pulmonary and heart functions are normal. And one exciting result was that Spencer's thyroid is functioning normally. Total body irradiation can permanently damage the thyroid and many kids end up on thyroid medicine for the rest of their lives. Hopefully this will continue. Spencer's DNA chimerism (pronounced "kai-mer-ism) test is not back yet (to examine percentage of donor cells), and the big immune function tests will take another 3-4 weeks. But things are good. (Chimerism news: test results came back Friday - 100 pecent donor cells.)

Now let's go back to Monday. As you can see by the home photo we took a day outing to Spencer, North Carolina - home to the NC Transportation Museum. They have a train ride, car and train museum, and one of the last operational roundhouses in the US, among other things. This is the longest and furthest outing we've had with Spencer for a year. Spencer (the town) is 1 1/2 hours away towards Charlotte. We jumped at a very narrow window of opportunity - the weather has not been as hot or humid, Spencer is just in shape to go, and school is in but it's still too soon for school groups to be showing up so no one was there. Of course we called ahead to make sure.

They were so great to us at the museum. They woudn't let us pay for the train ride, made sure that we could ride in our own coach, took pictures of Spencer with the train, and then offered for Spencer to ride with the engineer up front in the diesel engine. Spencer pretty much wanted to ride in a coach but we persuaded him to drive the engine (see photo album). He was a bit reserved, but he settled in and even blew the horn at the end. And in true Spencer style, after the fact he talks it all up, "I went on a train. I was in the engine. I blew the horn!" Then we toured the museum and roundhouse, where they have steam engines, diesels, coaches, cabooses you can walk through, and a breakdown train. Then we bought Spencer a toy in the gift shop. What did he want? - a plane...well, four of them actually, so Mommy and Daddy would have one too.

After that we took a long stroll through Spencer and up to Salisbury. Then we went home. It was very nice and Spencer chatted our ears off all the way there and back.

After our Dr. K day on Tuesday we went back out to play mini golf with Jared, Lynn, and Don. Spencer's game is improving as he made a birdie and a legit hole-in-one, the only one of the night. He made his ace on the hole with the castle (see photo album), but I don't think he saw his ball go in the hole. It was pretty cool, and Dad was videoing at the time (of course). Then we all went to the Pizza Kitchen where Spencer out ate Jared. Spencer has thrown down the challenge to Jared, showing him the way to get back home is through the tummy. Jared and Lynn are anxious to get home to Florida but Dr. K said no way until Jared starts packing it away a bit better. Secret Link

Now after a whirlwind first half of the week we're slowing it down. Spencer's still pretty weak and we don't want to push him too hard, even though he has no problem with pushing us. Spencer is doing so well, but to bring this all back down to Earth we would like everyone to please send some much needed thoughts and prayers to two of our tranplant friends who are not doing so well. Sir Ian is still struggling with serious complications and is in the PICU. Ian's situation is poignant with us because he was released with Spencer and was doing so well, nearing 100 days when he started having trouble. But hardest of all is Folden. Folden was Spencer's next door neighbor in 5200 and his second tranplant has failed. There is no assembling any series of words that can do justice to what they are going through right now. But I think everyone is in awe of how they are handling it, and how Folden's mom can capture her emotions and write them down in the website at a time like this. They have given everyone on and off the unit a huge jolt of strength by showing their own strength. And everyone is doing their best to return the favor by praying in any and every way for Folden. He needs it. It is his hope.

SOMETHING GOOD THAT HAPPENED TODAY:
This one should be taken in context, because if you had told us, on the day Spencer was born, that this would be one of the things we would be proud of, we would have bolted for the door. On Wednesday we took Spencer in for his CT scan without sedation. This was the first time we had done this, with a scan, MRI, radiation, anything, so we didn't quite know what to expect. But any jitters were unfounded. The boy is turning into a little man. He was so amazing we were almost crying. He had to hold three different postions completely still while stuck inside the giant loud donut. He took the situation very seriously and you could see the concentration on his face as he held rock steady. Kerri and I were often looking at each other with silent expressions that showed our thoughts - proud beaming parents of an unbelievable kid, but also somewhat ill at the thought of how and why we came to be here. And can we please please please never have to do one of these again?

Wednesday, August 25, 2004 1:24 AM CDT

Day 111

Check out the new photos in the photo album, but these won't last long as we've got some great new ones I just HAVE to put up.

Unfortunately I just don't have time right now as things are going to be too hectic for the next couple days. I also can't do a complete Tuesday update (Dr. K Clinic day) as I've got to get to bed so we can somehow get up early in the morning. We are in the middle of Spencer's 100 day tests and things got off to a bit of a crazy start.

The schedule we were given had blood draws, echocardiagram, and pulmonary funtion tests on the 25th, and a CT scan on the 26th. Of course the 24th (today) was a Dr. K day, which is big unto itself. We've been trying to get the tests on the 25th moved to the 24th so we could do stuff while waiting for Dr. K, and therefore not have three early and long hospital days in a row. What we, and everybody else didn't know is that the dates on the schedule were wrong by one day. By the time we talked to Barbara in the clinic we had already missed all three of our tests. They were, in fact, on Tuesday the 24th, and not on the 25th. Someone blew it.

So everyone went into scramble mode as scheduling all these things is no small matter. We were able to do the echo and blood draws Tuesday afternoon. We've got a 9:30 AM CT scan on Wednesday and we're suppose to try to fit the pulmonary tests in Wednesday too. On top of that Monday we had a huge outing (photos coming), Tuesday night we played minigolf with Jared again, the apartment is a mess, we're behind with the business, and we want to watch the olympics - so just no time for updates, or photos, or cleaning, or sleep. Good problems to have all in all, I suppose.

But, just quickly, Spencer is doing really really well...star patient. Platelets are up to 128, steroid dose is down to 1 ml twice a day, and we've weaned 1/2 of one of his blood pressure meds. It's possible that by next week platelets will be back in the normal range (150 to 400). We could be looking at almost completely normal blood counts by next week, first time in a year. The only other thing that remains a bit low is his magnesium level.

More later.

SOMETHING GOOD THAT HAPPENED TODAY:
I think we're returning the favor to Spencer. He's been non-stop wearing us out, but the past few days we've taken him out to eat, on a full day excursion, more minigolf, more eating, Dr. K days, 100 day tests. Now we're wearing him out for a change. Oh, but we're still worn out too. I guess that's the way it goes.

Thursday, August 19, 2004 11:44 PM CDT

Day 106

(All new photos in the photo album)

Exactly 366 days ago (It was a leap year remember?) today Gramma Kristie noticed a couple small bumps on Spencer's neck. You know the rest.

Besides having the attention span of a gnat, Spencer is doing great. We used to mention the puzzles Spencer would do, or what game he played. But now he just plays with something for 5 minutes then goes on to the next thing, and the next. He'll draw half a picture and be done with it. He'll rip through one puzzle and be over it. He'll dump all his blocks and put a couple together and be done with it. He'll get all his construction trucks out to scoop the blocks back up, but be done after two scoops. He'll dump all his monster trucks and race cars and not play with them. He'll push his trains around the track once and move on to the next thing. He's scatterbrained. And of course he won't do this by himself, we HAVE to do it all with him. We'll be just getting into something, then have to say, "but, but, but...", as Spencer heads off for the next project. Although we did have a fairly extended play-doh session today. The apartment is having a tough time getting through hurricane Spencer.

But the stuff Spencer enjoys most, and will play the longest, is one-on-one interaction - no toys necessary, like playing monsters, trying to scare Mommy as a T-Rex or LGM, or other silly Spencer games like hiding from someone (not very well), jump and tickle, unstick the snore, mosquito blito frito neato (or whatever other rhymes he can think up), bulldozer ball, and boy stuff like smell my feet and making gross milkshakes, booger milkshakes being his favorite. One gets the feeling Spencer doesn't even need all the toys he has around here.

Wednesday we had a super great time late in the day. In typical form we left the house at 7 PM to do something for the day. This time we met Jared (Spencer's translant buddy) and his parents Lynn and Don at the miniature golf course that is about half a mile away. It was anybody's guess how much fun Spencer would have, and he did great. He charged off ahead of everybody at each hole. I'm not really sure that Spencer knew that the rest of us were trying to play too. But he made some epic shots. He even birdied a couple of them. After a while he would say he got a birdie every time he got the ball in the hole. At the end of the round he wanted to know where his birdie was. The last hole is where you don't get your ball back, which really frightened Spencer. Of course his ball was orange and we was NOT going to part with it, no way, no how, and he didn't. But he was upset that Dad had hit his green ball into the last hole. Don saved the day by getting Dad a new actual golf ball out of his golf bag that was in Don's truck, and by giving Spencer the scorecard that said Spencer had won. And this morning Spencer painted the golf ball green so Dad could use it again. We would have some great pictures to post of this, but in the frantic moments finally leaving the apartment, Dad forgot his camera.

Afterwards we all headed to the California Pizza Kitchen and had a nice meal outside. It was Jared, Don, and Lynn's first meal out together post tranplant. They were a bit nervous but it turned out great. Spencer really likes Jared and latches on to every word he says. Jared is Spencer's North Carolina bigger kid buddy, like Sean is in California, like a role model or hero or something. It's neat to see him able to socialize a bit.

And today (Thursday) we were supposed to have a physical therapy session in clinic with Lisa, but Lisa was forced to cancel. And now that Lisa will be gone all next week Spencer won't have PT again until the week after next. We were pretty bummed about this as getting PT has been a continuous struggle for us all the way from Stanford. And it is supposed to be a priority. Unfortunately it's because Lisa is completely overwhelmed by the number of patients and desperatly needs some additional help. We've been a bit noisy about this as we will no longer allow Spencer to fall through the cracks anywhere with anything by anybody. We've learned the hard way. But Spencer is continuing to improve.

Thanks so much for checking in and please sign Spencer's guestbook.

SOMETHING GOOD THAT HAPPENED TODAY:
Spencer did so well with Lisa in physical therapy on Tuesday, and wore his orthotics for 5 or 6 hours on Wednesday, then did great at minigolf, having a long couple days, that I decided to give him a break Wednesday night and not put his little therapy boot on at night that keeps his ankle from drooping down while he sleeps (toes pointed). When he woke up Thursday morning and realized that I hadn't put his boot on he lit into me. "DAD! You didn't put my boot on! You're a bad Daddy! You gotta put my boot on. My boot is very important! Bad Daddy!"

Won't do that again.

Wednesday, August 18, 2004 1:29 AM CDT

Day 105

Good news: hard to think of what to say in the update. Our lives are boring...crazy whacky hectic, but boring.

So we ticked off another Dr. K (Dr. Szabolcs actually still) clinic day. Spencer's bloodwork is still wonderful. He just had his weekly IVIG and that was about it, besides waiting for the checkup. Oh, and he also had a very good PT session with Lisa. Lisa is very very happy with Spencer's progress. Spencer is eager to show off his knees-bent squating postion now - something unthinkable a month ago. He is still unstable and weak but he's made a lot of progress lately. He's now getting up off the floor by himself AND with his knees bent. He can also manage about a 4 inch step by himself. And Monday he wore his braces for a good 5-6 hours (not that he really likes them that much).

Speaking of Monday, we went back to Pullen Park for some more rides. Spencer really wanted to ride the train, which we did. Unfortunately the Carousel was broken, but we went on the peddle boats (Mom says paddle, Dad says peddle, so it's a peddle paddle battle). We had the boat for 30 minutes and Spencer thought it was great for 5, maybe 10, then he was over it. He insisted we peddle back to the dock, which we did in a very round-about manner. We were out for 20 to 25 minutes. Then Spencer got excited to use the swings. We wiped one off and he had the greatest time (on the big-boy swings). Mommy and Daddy were actually swinging along side for a while. It was probably the first time that it seemed we were doing something normal, unaffected by the events of the past 12 months. Until, that is, he tumbled off the swing onto his back (about a 1 foot drop) and cried. That ruined his day a bit, but he was fine. We are thinking of some more daytime things to do now. Possibly on the agenda is a date with Jared's family for some miniature golf, and even a day trip to the train museum in - get this - Spencer, North Carolina (I kid you not). It's a little less than two hours away towards Charlotte.

Next week, I believe on day 113, Spencer goes in for his 100 day studies (don't ask why it's this late). This consists of lots of extra blood tests, pulmonary function tests, echocardiagram, and a cat scan. Some of the results we'll get back within a few days, while the immune function tests can take several weeks to come back.

Thanks to everyone who has sent their congratulations to Spencer for doing so well and passing the 100 day mark. We are amazed that so many people follow Spencer's progress with such enthusiasm and dedication. It makes this heavy journal a bit lighter. And here's to lots more boring updates.

SOMETHING GOOD THAT HAPPENED TODAY:
Well, now this is something good that is happening every day. Spencer is wearing us out. He goes and goes and goes, from 9 AM to 11 PM, no nap, go go go go, blab blab blab blab, play play play play play, just like he did before all this happened. Sometimes we feel guilty (okay, a lot) that Spencer has such worn down parents, who are unable to keep up the level. We have no one to help and he just goes all day long, without a break. But without hesitation this is going in the something good column. As Dr. Szabolcs said today - this is the type of kid we want around here. This is truly the best thing happening, and tells the whole story...now I'm going to sleep.

Friday, August 13, 2004 7:47 PM CDT

Day 100

Spencer’s first big milestone! (besides engraftment that is) But truthfully everyday feels like another milestone around here! I got an email from a friend last night and she said we “have lived a decade in the last year.” That’s pretty much what it feels like! I’ll try not to get all mushy and philosophical today, but no promises.

Spencer went to the clinic for a PT visit this afternoon. He wasn’t very cooperative, but with A LOT of help from Lisa he climbed two flights of stairs. Unfortunately, he only wants to use his right leg to push with. Lisa and I tried to convince him to alternate with every trick in the book and all the logic we could muster. He got to the top his way, and in a rotten mood to boot! At least Lisa got to see what we have to deal with when he makes up his mind he’s not going to do something. I think he actually threatened to throw her in the dump at one point! Mommy was embarrassed, even though it seemed like classic three-year-old behavior– not that I know much about regular three year olds. Mommy and Spencer then went on an ice cream date afterwards to celebrate Day 100, and climbing the stairs, and voila – presto chango – sweet again!

Spencer’s labs look great! His chemistries are all normal. His WBC is in the mid 6’s and his hemoglobin ranges from the mid 11’s to high 12’s. Platelets are now up in the 80’s and still climbing. We are used to looking at labs from a chemo standpoint and it’s new and fun getting used to “normal” looking labs. Spencer’s still going a million miles an hour from the moment he wakes up in the morning – its PLAY TIME! I don’t think he stops talking until he passes out around 10:30. We have to remind ourselves once in awhile about the month he didn’t talk while he was going through re-induction at Stanford and how much we ached to hear his sweet voice back then. Wish fulfilled!

100 days post transplant is kind of a random number but the doctors use it to mark some huge accomplishments regarding the transplant. Since Spencer hasn’t developed any graft vs. host disease issues yet we are down to about a 10 percent chance of having any problems. We still worry about the disease that we won’t name (you know like in Harry Potter), but every month that goes by the risks get lower. And in Duke’s latest studies they haven’t had an ALL relapse after an unrelated cord blood transplant beyond the sixth month. We wish we could use a time machine and fast forward, but for the most part, I think Brian and I are letting go a little and just enjoying how good things are right now. I know my thoughts and prayers have turned to saying thank you and reveling in all that is going well.

As we sit here waiting for Bonnie and Clyde, or Charlie, or whatever that hurricane’s name is to hit, lets give thanks to all that is going right! NO MORE CHEMO! No GVHD, normal labs, good appetite, no nausea, eyebrows, eyelashes, fuzz on the head and getting stronger and more active everyday. NO MORE CHEMO! An occasional meal at an outdoor restaurant, visits to the park, a bright happy sweet boy well on his way to healing his body from the ravages of the last year. And just in case you missed it - NO MORE CHEMO! We are so grateful to all of you who have taken the time to follow our journey and cheer Spencer on. Thank you so much for all the kind messages in Spencer’s guest book, the cards and gifts, the positive thoughts and prayers. Thank you to all the friends and family who have helped us along the way. You can’t do this without a whole support team.

Our sweet celebration is tempered by knowing that many of the friends we have made at Lucile Packard, here at Duke, and in the Caringbridge family are having a hard time right now. Christopher Melkonian is having his transplant in about 4 days for relapsed ALL. We are praying for his new cells to engraft soon. Please send good thoughts and prayers for four-year-old Ian, who is dealing with complications after his cord blood transplant at Duke. Please pray for Robert a wonderful eighteen-year-old back at LPCH who needs to see his lymphoma mass shrink so he can have a stem cell transplant in September. Pray for Ben Murphy as he nears the countdown for his second transplant in his battle against AML. And pray for Folden who’s second transplant has failed.

Thank you everyone. Now we head for day 180 double speed – Spencer style…

SOMETHING GOOD THAT HAPPENED TODAY:
Speaking of thanking people; Last night we went back to Maggiano’s Little Italy restaurant for our weekly dinner out. We went back to the same restaurant because the food was great and Spencer had a great time, not to mention we can only eat where there is a nice outside area. The chef heard we were back and came out to visit. Spencer drew her a nice picture, complete with a rocket, which made her very happy. She has a two-year-old kid. We were also taking Grampa Fred up on our rain check for Kerri’s birthday dinner. Well, the chef wouldn’t let us pay for dinner…again! No amount of complaining would change her mind. They are so great there…the most wonderful things come from people you don’t even know. Thanks again Maggiano’s and we’re paying next time.

To top it off we ran into Dr. Szabolcs and his family walking around the mall just outside the restaurant. That was funny. It’s fun to see your doctors outside the medical arena. He promised not to turn us in to Dr. K for carousing around with normal people.

Wednesday, August 11, 2004 0:27 AM CDT

Day 97

Day 100 coming up on Friday, Spencer still doing great.

Today was our Dr. Kurtzberg clinic day but she is gone for a couple weeks so Dr. Szabolcs is filling in. We saw Dr. Szabolcs quite a bit while we were inpatient and really like him (we really haven't met a doctor or nurse we haven't liked the whole time we've been at Duke). The biggest problem we had with Dr. Szabolcs was pronouncing his name. It's something like sha-bolts, but it's kind of tricky. Shortly after we were released from the hospital we were driving by the clinic one day, and while we were stopped at the light he walked across the crosswalk. We hadn't even seen him yet when Spencer blasted out, "Look Mommy! There's Dr. Szabolcs!", with the perfect pronunciation, naturally. We told the doc that story today and Spencer cowered under his pillow.

Anyway, it was a good clinic visit. We have weaned another ml of steroids as planned. Everything else is stable. Spencers labs are all great, with platelets up to 81 (thousand). And his chemistries and liver functions have stabilized nicely. The immediate concern at this point is GVHD (graft vs. host disease). This far out from transplant what you get is chronic GVH, which is not normally as serious as acute GVH that tends to hit earlier. Chronic GVH often manifests itself as skin rash. So far we have not had any and are hopeful this will continue. Today we learned that the window for skin GVH is a full year, but since we haven't had any so far we have a better chance of dodging it. The steroid wean is dependent upon lack of GVH so we still have our fingers crossed that things will continue as they have been.


Spencer also had a physical therapy session with Lisa today, and the report is good. The big big big event came yesterday though, when Spencer picked himself up off the floor by himself, without holding onto anything for support. That was huge, and he got to go to the Gramma Kristie box for that one. We really didn't expect that for another couple weeks. Get rid of the steroids - Spencer gets stronger. Still working on getting up a 3 or 4 inch step. Some other good news on this front is that he is gaining strength lifting his foot at the ankle. One of the nasty drugs in the leukemia chemotherapy protocol is vincristine - it attacks the nerve endings and does permanent damage, particularly to joints. It really attacks the foot and causes a condition called drop-foot, where you don't have any strength left in the muscles on top of the foot, so your foot hangs down. Spencer had this bad when we got here, from his reinduction at Stanford when he got 5 doses of vincristine in 5 weeks. Ouch. But we have been hopeful that this wouldn't be permanent, because overall he will get nearly 1 1/2 years less vincristine since we abandoned our frontline protocol. Hard to say it, but there are some benefits to early relapse and going to transplant - primarily getting off chemotherapy (but honestly I can't think of any others besides that at this point). Chemotherapy really sucks. So things are looking good for drop-foot recovery. It'll still take quite some time though.

The types of questions we are asking in clinic are trending towards, "well, what can we do with Spencer now? Can we go here?, do this? do that?". And we are getting more freedom to go out, particularly if the weather continues to be nice (although I see some tropical storms headed this way for later in the week). We've already gotten the outside eating at restaurants thing, and now we've added uncrowded spots like Farrington Village, which is some high-end development that has a little shopping area with toystore, bookstore, cafe, etc, along with gardens, lakes, cows, goats, etc. We can even go in the stores without a mask if it's uncrowded. We can also go to the Planetarium at UNC, things like that, during the week, when it's uncrowded, with a mask, and wipes, and full paranoia. So, we're making progress.

We are really looking for things to do with Spencer outside the apartment because we are litterally going crazy. And I mean it, we are going crazy. What we have is a 3 year old boy, with 100 percent of the energy that goes along with being this age. In normal life this energy gets released verbally and physically. In Spencer's case, however, he doesn't have either the permission or the ability to release his energy physically in the outside world (beyond the apartment at least). So, it all comes out his mouth, all day long, every day. We're so happy that things are going so well, but it's coming at a price - Mommy and Daddy are both cookoo, cookoo, cookoo.

SOMETHING GOOD THAT HAPPANED TODAY:
I think we've finally broken through the leg orthotics barrier. When Spencer got up off the floor by himself on Monday he immediately started saying, without any prompting by us, "Lisa was right!" (Lisa, his physical therapist), "Lisa was right! She says if I wear my braces, I'll get stronger. She was right!" Now Spencer wears them for a good portion of the day.

And here's one more Spencerism:
Maybe you'll only get this if you're familiar with the cooking show Emeril Live, but tonight while he was watching it, Spencer leaned over to Mommy, stroked her leg, and said, "Oh yeah, babe!"....Hmmmm.

Saturday, August 7, 2004 1:52 AM CDT

Day 93

New photos in the photo album.

Spencer continues his happy ways. And it's been a good week.

Every day seems the same around here, at least with what we're doing. But today was notable because it was a down right nice day. I think Mommy even said she was cold a few times - clear with pretty puffy clouds, nice breeze, low humidity, and not a lick over 80 degrees. Supposed to last at least one more day too.

So we bopped over to the clinic in the afternoon just for a PT session with Spencer's physical therapist, Lisa, who thinks Spencer is showing good progress. Slow, but steady. Then we did something amazing - we went on a picnic to Duke Gardens with Spencer's transplant buddy Jared. We've all been waiting a long time for something like this. It was truly wonderful. There's a couple kids who've been through a lot, both doing great. Spencer happily scarfed down the gummy bears that Jared gave him. Check out the photo album for the scene.

If that wasn't enough, we had a really fantastic afternoon and evening on Mommy's birthday (Wednesday). But the weather wasn't quite so nice that day - 98 degrees with 95 percent humidity...blaaaaaa. But very late in the afternoon we headed to Pullen Park in Raleigh, where they have a cool little train that chuffs around the park, an old-time carousel, peddle boats, and other cool stuff for kids. In true Spencer form he was completely stoned-face during the 3 rides he went on. He sits there like this comatose sponge, sucking the whole experience in, showing absolutely no emotion. Then, when he's done, in the stroller, or in the car, he just blabs endlessly about all the stuff he saw and did, and about how fun it was. And how we need to go back as soon as possible. Kind of odd but classic Spencer. See the photo album for the scene.

Then we went to dinner at Maggiano's Little Italy restaurant in the Southpoint Mall. We got a great outside table and a super cool waitress. The chef even came out to meet Spencer and talk to us about our dietary concerns. (Spencer kind of breaks the rules a lot with his cheese intake, and has been for quite some time. He's handled it all great, but some of the cheeses in a restaurant like this could require a bit more caution.) The food was great and the dessert was even better. We talked to Grampa Fred on the phone and he was all excited to treat Kerri to her great birthday dinner. He said to go wild (which we didn't really). Then when the bill came, along with Kerri's birthday dessert complete with candles, the restaurant comped our entire meal. Wow! What could we say but, "Thanks". The perfect ending to a very nice birthday, and can we get a raincheck Grampa Fred?

Thanks to everyone who sent happy Birthday wishes to Kerri. It was a happy Birthday.

SOMETHING GOOD THAT HAPPENED TODAY:
This is what we (as in everybody) have become, captured in a Spencerism:
Spencer: "We can't go strolling in a thunderstorm."
Dad: "Because we might get wet."
Spencer: "We need an umbrella."
Dad: "But we don't have one."
Spencer: "Maybe we can get one online."

Wednesday, August 4, 2004 0:44 AM CDT

Day 90

(Day 91 now, which also happens to be...Mom's birthday. Happy Birthday Mom!!)

Wow. Shows you what we've become with this whole expereince. I was just thinking about getting started on this update, at 2 in the morning, when a blood-curdling scream came out of Spencer's bedroom. I was up and in the bedroom almost before my hands left the keyboard. Mommy was also up and in action in 0.1 seconds flat. What I'm getting at is that our senses have been so heightened from all the medical situations over the past year, that we never relax, flitting around on edge like some paranoid bird, eyes open so wide that they never close - the fevers, the headaches, the puking, the diarrhea, the falling...just paranoid over everything. Kind of like the way we were, and a lot of other people were on the Central Coast, after the San Simeon earthquake in December, and after the 1000th aftershock. Can't relax - ever. Sucks.

Turns out Spencer was having a bad dream and he fell out of bed. He hasn't done that for a long time. He's fine. Scared the crap out of everybody though.

Anyhoo. Today was our Dr. K day, of course. It was another short one, just 3 1/2 hours. And Spencer continues to do great. Big news is - no more IV pumps. His last IV pump med, Voriconozole, is now going oral. We won't miss those pumps. That's four hours out of the day that we get back now. Spencer also got to wean another ml of steroids per dose. We are now down to 3 mls twice daily. If everything continues to go well Spencer could be off steroids completely in about 4 weeks. We're doing some serious wood-knocking though because steroids surpress GVH (graft vs. host disease), and removing them exposes more risk for GVH. We just hope Spencer's got such an excellent graft going that he won't have any complications. So overall, Spencer has 5 oral meds to take in the morning, and 6 at night, plus the IV steroids and a protien supplement. And he does a great job at it.

He still doesn't like his leg braces but he is making progress at wearing them. He had them on for several hours today. He walks so much more normally when he has them on. His knees are bent properly, not as knock-kneed, and his feet point inward better. But he is very unstable with them on, which is what he doens't like, and who could blame him. He's weak enough as it is just handling his own two feet, then we tell him he's got to wear these clunky braces, with way oversized shoes too when he goes outside. He looks like he's walking with ski boots on. He's a trooper.

The other big news is that we got the okay to take Spencer to the outside areas of restaurants, as long as it's not too crowded. Spencer's favorite is the California Pizza Kitchen (yes, there is one here in North Carolina, and no, they don't call them the North Carolina Pizza Kitchen). We took him there last week when it was raining and no one was sitting outside. Then he whined for days and days that he wanted to back there every day for dinner. (He eats fusilli alfredo, not pizza, surprise, surprise). But you should have seen the pathetic transplant family sitting all alone outside in the rain. We kept dry though. And it was a lot of fun for us all.

Perhaps we'll go back there for Mommy's birthday. We've got to pamper her today. (Yes, yes, we pamper her every day.)

Lastly, we just wanted to introduce you to some members of our transplant family. Everybody probably knows about Spencer's super transplant buddy Jared, but here are some other kids who we shared 5200 with back in May. They will always be a permanent part of our memories as they went and continue to go through the same experience as us. They are all great kids and some of them could use an extra dose of prayers and well-wishes. Folden, in particular, is in search of a miracle, please send some energy his way. He is a great little kid and was Spencer's next door neighbor while we were inpatient. If you've seen the photos on the other part of Spencer's site you may notice the shot of Spencer with four silly rockets stuck to his head. Folden sent those over as a gift to Spencer.

Annabelle
Ian
Folden
Jhyrve
Markell
Ayman
Jared

Thanks for checking in.

SOMETHING GOOD THAT HAPPENED TODAY:
Spencer sometimes shows some surprising grasp of the English language. We are removed from normal 3 year old development so we don't know what other kids are saying, but here's a few that he came up with in the last few days:

Dad accidentally spilled about one drop of water on Spencer's shirt, to which Spencer blurted out: "You spilled on me! You're Despicable!" (Heck, I hardly even know how to spell that one.)

When Tony Stewart spun out and crashed his #20 car in last weekend's NASCAR race Spencer squealed with glee and said, "Whoa! He's crashing again! He's a bad driver. He's pathetic!"

Sunday, August 1, 2004 9:25 PM CDT

Day 88

Hello everyone,

Warning! Here comes another one of those long emotional updates. It’s Sunday after all. Dad and Spencer are having a father and son moment watching fast cars on TV and lining up all Spencer’s NASCAR cars. I guess I better start off by saying Spencer is doing great! We are seeing him get a little stronger everyday. He is walking better and farther and spending much more time off of the couch. We got an indoor croquet set and that has been a big hit. He is still putting together about ten puzzles everyday and doing lots of drawing, painting, skyscraper construction and clean up with his various tractors. He’s still getting in a generous helping of the Food Network. Hopefully, it will expand his food palette, seeing all those herbs and unusual ingredients. He likes reading books too, (these being our restful moments and relaxing for mom and dad). His current favorites are Click, Clack, Moo and The Snowball.

We are having a tough time convincing him to wear his new $1000.00 leg braces. We are taking it very slow and hoping patience will win out. When we do get them on him, he outsmarts us and sits on the couch until we take them off. His labs are all looking good. His chemistries are almost all in the normal range. His wbc (white blood count for our non-cancer friends), has stabilized at around 6,000, which is great. His platelets are officially engrafted and on the rise. So far we are on target to get him weaned off of steroids in about 3 weeks, which should make a big difference in his energy level and his strength returning. Getting off of steroids will also mean gradually getting rid of most of the extra weight and the puffiness in his face.

Brian and I have been so caught up in our daily struggle the last eleven months and especially since Spencer relapsed in late February, that we haven’t had time to say thank you to all of the people who have been so helpful and supportive during this time. Unless you have been down this path, it’s probably hard to imagine just how much those encouraging messages in Spencer’s guestbook mean to us. This is a lonely, scary road. We are basically in isolation in our little apartment, other than seeing the doctors and nurses twice a week. I know it’s hard to know what to say. Spencer’s best friend Matt was diagnosed one year before us with Neuroblastoma, a tumor cancer. He had a stem cell transplant last spring and is doing great. We struggled with knowing what to say too, so we appreciate how hard it can be.

We just want to take a moment to say a special thank you to the friends and family who have stood by us through this time. Toni and Scott who have kept our business going at home – we would not have been able to do this without your help! Thank you so much! Some of you are old friends, who we haven’t seen for awhile – thanks Katie, Brandt and Shannon, for the cards and gifts for Spencer and the comforting messages. Lisa and family back in Palo Alto who let us stay in their cottage while Spencer was inpatient. Matt’s Grandma Miko who has been one of our biggest cheerleaders. Pam McDonald’s daughter’s, Paige and Allison, who sold lemonade to raise money to send to India for a special Healing Blanket for Spencer. And to all the people at Lahontan who are organizing the golf tournament to raise money for the family support program here at Duke in honor of Spencer. I am so far behind on thank you notes, but we so much appreciate all of you who have sent cards and gifts to Spencer.

Cambria Fire Dept. Captain Michael Gallagher and his crew have been amazing – ever since coming to Spencer’s 3rd birthday party they have cheered him on. Thanks to my Aunt Clara, Brian’s Aunt Ellen, and my mom’s anonymous friend who have also generously helped us out. Even with insurance, having a child with a chronic life threatening illness is very difficult financially, no matter who you are related to. Thank you Auntie‘’Chell for always being there and willing to listen when we are down. To my sister Kendi, who calls and checks on us almost everyday, and my mom who has gone all out to help us. My mom and sister even set up our apartment for us before we flew out to NC. My mom has done so much to help make this easier. Thanks to all of the grandparents for chartering the private jet for us to get us to Duke.

Some of you are new friends who we have met through Caring Bridge, the ALL Kids List, or families here at Duke and back at LPCH. Thanks Kim, Pat, Jill and Michelle who have spent so much time offering comfort, hope and great advice! To the special nurses who continue to check on Spencer and send encouragement. Our favorite doctors, Dr. K. and Dr. Prasad and all the wonderful NPs here at Duke. Dr. Kuo back at LPCH, who took the time to come out to the car and check on Spencer and make the call he needed to be admitted back in March, saving us from worse trouble. He even drove with us to the ER and smoothed the way for Spencer’s admit. Marilyn, the chaplain at LPCH who continues to pray for Spencer and us, even though we have left the state. We are so grateful to all of you, because leukemia and transplant is not something you can get through without support. I really wish we could offer a more formal thankyou, but this is all we have time for now.

The last month or so has been very difficult for Brian and I. The medical crisis has eased up enough that we finally have time to think about the enormity of what we have done since Spencer relapsed. It was so hectic just getting to transplant, that I don’t think we had much time to think about what we were embarking on. In hindsight that is probably a good thing. It’s hard to express how terrifying it is to be in our situation – kind of like being backed up on the edge of some huge precipice and having to run through fire to save your child – and you don’t know how thick the wall of fire is or if you will make it through. We made it through the fire, I think, and now we are just waiting and praying that the stem cells will work their miracle. This is the hardest part. Waiting. Worrying. Trying not to worry. Trying to stay positive. We are walking an emotional tightrope. We have to keep it together for Spencer. One thing we have learned is that we love our little Rocket more than anything and everything else in this life. But no parent should have to see their child go through this just to figure that out. It is hard to take time away from him even to write this update.

We have been surprised by some of the people who vanished from our life since our world came crashing down eleven months ago. It hurts, but we try not to dwell too much on the friends that we thought would be there for us and think about all the support that has come from new friends and unexpected places and old friends who have reappeared. So much of the generosity, caring and compassion that we have experienced has come from people that we have never met in person or we became friends with through this experience. Simply amazing. Thank you all for your continued prayers and good wishes, your kindness, compassion, your prayers and your time. We don’t say it often enough, but please know how much it means to all of us.

Love,
Kerri, Brian and Spencer Rocket

SOMETHING GOOD THAT HAPPENED TODAY:
Spencer’s favorite racecar, the Jimmy Johnson #48 car (part of the Hendrick Racing team who came by the hospital a couple months ago – at least the pit crew guys), won the NASCAR race today, making Spencer and daddy very happy.

Wednesday, July 28, 2004 0:18 AM CDT

Day 83

Another week, another Dr. K day (our week starts...or ends?...on Tuesdays).

But before I elaborate there is some great news - Spencer's simultaneous transplant buddy Jared was released from the hospital today. Hoorayyy! We don't know how they kept it together. It seems like we've been out for a quite a while, and the whole time they've been in the same little room up on 5200. It's a wild and scary ride no matter how you slice it, but their's was one long engraftment, doing well and keeping it together through all of it. We are very happy for them. News from 5200 is that there have been some tough times for some families up there lately - some unimaginable (well, we used to think it was unimaginable, but it's all too real now) emotional suffering. Yes, we are so happy Jared is out.

Back to Spencer. All things considered it was a very short Dr. K day. We didn't go in until 2 PM and we were out a little after 6. Very nice. Spencer's platelets have been holding steady around 28-30 all week so his days of platelet transfusions could be over. Great news. His white count, red count, and chemistry levels are all good too. Dr K and staff are all still very pleased with Spencer. We got to wean another ml off his steroid dose so we are down to 4ml twice a day. Good, good, good. Also, we are getting to convert the cyclosporin to oral, which only leaves one more IV med to do at home, voraconazole, and that will probably go to oral within a week or two. Bye bye home IV pumps pretty soon. (actually, the steroids are IV but not with the pumps.)

The only slight bummer about today's Dr. K day was that Spencer had to do his first pentamadine (sp?) dose. This is a drug that protects against pnemonia. Normally leukemia patients take oral septra 3 days a week, but that drug surpresses the white blood count so transplant patients can't take it. The good news about pentamadine is that it's only once a month. The bad news is the best and safest way to take it is to breath vapors. So, you have to go in this little tent and have a mask up by your face (see photo album). That scenario and 3 year old kids don't mix really well. You also start by breathing albuterol which opens the lungs up, and that can make you feel nauseaus. I guess a lot of kids throw up. Spencer got a pretty bad upset tummy. So, it takes about 15 minutes each and Spencer did a really good job, but pretty much lost it right at the end, right when Dr. K was walking into the room. It was a bit sad because he's been so happy lately but he was successful. He got a nice prize when we got home, and we fixed him is favorite dinner. We'll see what happens next month.

And Spencer's energy level has really been cranking up this week. He's on the move a lot around the apartment, walking, playing, and being a 3 year old. A couple days ago he even walked all the way up to the office and back. He hasn't walked that far since February. So things are moving in the right direction. Spencer's orthotics arrived today too. Seems like it might be a tough sell, but hopefully he'll warm up to them. Stay tuned. Thanks for checking in. And thanks for everyone's support.

SOMETHING GOOD THAT HAPPENED TODAY:
I suppose the theme around the apartment these days is, "Can you put on my cooking show?". Spencer is absolutely obsessed with the Food Network channel. We think it's pretty cool, but possibly a bit out of hand. He'll forgo Clifford, Sesame Street, Dragon Tales, Arthur, heck, even Teletubbies in favor of the Food Network. And lookout if Mommy and Daddy want to watch something, "NO! My COOKING SHOW!" Sunday was all about ice cream, which was pretty cool. All night long. But his absolute favorite guy now is, BAM, Emeril.

Note: I introduced our friends Topher and Dean last update, but I thought I'd leave this letter up in case anyone missed it. It's pretty cool.

Friday, July 23, 2004 1:00 AM CDT

Day 78

(couple new photos in the photo album)

And now for something completely different (Spencer's doing fine, by the way).

A fantastic way to make people feel better in this horrible world of cancer, for everyone - patients, family, friends, Joe Blow, is to be involved in fundraising and charity, which helps everything from families to medical research. People have already donated blood and run toy drives on behalf of Spencer, as well as made various donations to worthy organizations, including Caringbridge (this website). Even now Gramma Betty is helping with a golf tournament in Tahoe to benefit the Duke Medical Center Pediatric Transplant Program. What this does for us specifically, is to let us know people out there care. That at times they take it upon themselves to do what they can, even if they feel helpless to do anything. We just want to share one such story.

Now, we don't want to insult anyone who just sits down with their checkbook to exercise their fingers, nor anyone who walks or runs a half marathon at whatever speed, nor anyone who rides their bike 100 miles around Lake Tahoe, even though all that is wimpy compared to this. Heck, we don't even want to insult Lance Armstrong while he peddles up those little hills in France. But please.

This is what some friends of ours did...well, just read the letter. But first, some background into their mindset, at least so you don't go out and try this too (i.e. Don't try this at home). And this makes us feel even better because Dean and Topher were a couple of our best friends in the 1980's. We've grown apart, as friends sometimes do, and haven't seen them or had much communication with them in probably ten years, proving that true friends come out in situations like these.

So, Dean, Topher, and Spencer's Mom and Dad were competitive windsurfers back in the day, as well as fellow students at Cal Poly San Luis Obispo. Dean was a fitness freak (and obviously still is). He once ate so many carrots he was litterally orange. Now he is some psycho distance runner the likes of which you've never even heard. He's run races from Death Valley to the top of Mount Whitney and back, a marathon in Antarctica, and a 250 mile 10 man relay race from Mount Hood, Oregon to the Pacific Ocean...only he did it by himself...a one man relay. You read those right, and that only scratches the surface. So please stop scratching your head and I'll tell you a bit about Topher. Topher, thank goodness, is not quite so over-the-top. But he's a bit crazy too. Anyone who climbs El Capitan in one day would have to be. Now they've put all that energy together to help fight luekemia. Check it out.



By my math they did it in less than 12 hours. How do you top that? Well, no need to try. Thanks Dean, Topher, and Tim.

Tuesday, July 20, 2004 11:16 PM CDT

Day 76

Another Dr. K day already. When we got out of the hospital time seemed to slooowww waaay dowwwwwn. But now it's picked up the pace again. Normally I don't like life to pass by too fast, to enjoy it, but right now it can't go fast enough. Emotions have been running high lately and I don't know where this update is headed but I know it's not going to be the usual type. Both Mom and Dad have really been struggling emotionally lately, just trying to deal with the sheer scarry hell our lives are now riddled with. How to continue on without letting ourselves be ruled by fear. Lately we've just been questioning how we can handle it, to get beyond these critical days worrying about whether the transplant worked or not.

I think, before today, my main comment for the next update was going to be: "AAAAAAAAAAAAAAAAAAAAAAAAAAAAA
AAAAAAAAAAAAARRRRRRRRRRRRRRR
RRRRRGGGGGGGGGGGGGHHHHHHHH
HHHHHHHHHHHHHHH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! OH, THE HUMANITYYYYYY!!!!!!!!" This is how we've both been feeling lately. The hell, the torture, the dread, the disease, the treatment, why does it all exist? Why do so many have to go through it? And how? We'll let go of almost everything, many of which we already have - dreams, goals, ambitions, business, money, financial security, posessions, friends, grandchildren, the past, the present, even our own souls, WE JUST WANT OUR CHILD!

That's how we've been feeling...then we went to clinic today. At clinic you see that everyone there is in the same boat, or worse. You create a bond with the people, parents and patients, who were on the floor at 5200 with you. Today we learned of one great kid who relapsed, another who was doing great but is suddenly having some inexplicable issues, another who continues to struggle, two kids still on the floor taking forever to engraft, and Jared is still inpatient but things look good for him. The emotion just boils over. There is no out-of-sight-out-of-mind around here. We needed to get thrown a bone. And thank God, Dr. K did just that.

The doctors and nurses go through it too, I'm sure. Can you imagine a job like that? The dedication to keep at it? To make a difference... but only sometimes? For the youngest and purest and most high risk and helpless? Hero seems like such a corny word, but it fits. They are all heroes. They struggle through it too, I'm sure, but it did seem like they feel Spencer is a bright spot for them right now. They are proud of how well he's done. And Dr. K made sure that we know how far Spencer has come too. And that we should take comfort in that. But best of all she gave us some of their most recent numbers concerning relapse at this stage for similar scenarios. It's not zero, and statistics are not that comfortable for the unlucky people to already have been bitten by the low-odds bug, but it was good...much better than we thought. And, the timeline for getting closer to zero is much shorter than we thought too. Personally, I don't really want to discuss numbers quite yet (see what we've become?), but our nerves have been calmed for the moment, which will allow us to get to tomorrow. One day at a time.

And thanks so much for everyone following along with Spencer's journey. We really do appreciate all the support and great comments in the guestbook. And it gives us real meaning to be able to share all of his experiences with you. But we have to get that other stuff out from time to time. So, Spencer continues to do really well. His energy level continues to climb. His skinned knee is healing enough that his walking is improving again (his orthotics have still not arrived though). And the hair is on the comeback. At clinic Dr. K allowed us to wean another ml off his steroid dose. We're at 5ml twice a day. And she completely discontinued the GCSF - the white cell stimulating factor. We've been keeping Spencer's white blood count artificially high (between 15 and 30 (thousand)) with this for protection and some possible anti-leukemic effect. But we've gone as far as we can go and now we'll let it come down on it's own. This should stimulate his new marrow to kick into gear some more as well. Also, his platelet level was 21 on Sunday and Tuesday it was 22, so no transfusion and he may be stabilizing, which is great. Appetite is still good, no pain or other issues, and best of all he is very happy. He's our little star.

We'll probably update again soon, so we don't dwell on the emotional stuff too long.

SOMETHING (ELSE) GOOD THAT HAPPENED TODAY:
In the developing child category, we have these tidbits to report: Spencer can identify George Bush and John Kerry instantly on the TV, and he knows they are running against each other for President of our country. He also knows John Kerry is a windsurfer and kiteboarder (like Daddy). No political comments thus far.
When news from Iraq comes on the TV Spencer immediately says, "Those gun guys are bad! I don't like them! Turn the TV OFF!" (We can pull off some out-of-sight-out-of-mind for that kind of stuff.)
And for some real good news for Mom and Dad's future; when "Clifford the Big Red Dog" came on PBS the other day, Spencer wanted to change the channel to the Food Network so he could watch his cooking show. Bring it on dude!

Friday, July 16, 2004 11:37 PM CDT

Day 72

Ask and you shall receive. Check out some of the pages in Spencer's new little North Carolina critter book in the photo album. (Also some new photos in the archive (page 3 & 4). Click on the link above.)

Today (Friday) Spencer went with Mom to the clinic to get some platelets (part of your blood that causes clotting). It was his first platelet transfusion in a week. That's a nice benchmark and he's probably on the cusp of making more platelets on his own. We were a little flipped when the lab draw from Thursday came back with a platelet level of 47. It's done nothing but go down after transfusions, more slowly now of course, but on Tuesday he was at 21 (Friday's level was 14, with transfusions usually coming with anything below 20). We figured he was getting pretty darn low as he woke up on Thursday with peticia (don't know how to spell that but sounds like pet-teak-eee-ay) all over his calfs - tiny red dots that are from low platelets. But 47? No way. We didn't believe it, but oh well. Later we went to a park (weather was nicer) to fly Spencer's new rubber band powered balsa glider. He wanted to throw it from the top of this plastic play structure but when I was helping him down he rubbed his back lightly on some plastic edge and screamed. The result was an instant 5 by 5 inch dark purple mess on his skin. It was kind of scarry but fortunately it was only superficial. 47? I think not. Definitely some sort of mistake. More like 10 to 15. We don't want to think about getting some serious bruise with platelets that low.

(In case that last paragraph was confusing - here's the skinny: Platelet levels on Tuesday were 21, on Thursday they were 47, and on Friday they were 14. The bump to 47 was inexplicable and caused confusion. It was a lab error.)

And now we've gotten Spencer some wrap-around neopreen knee pad/braces for when he's walking outside. This way if he falls he'll be protected. His knee is finally starting to heal. Today he was bending his knee while walking for the first time in a week. And we got from the front door to the car (maybe 50 yards) in less thank five minutes.

So that's about the extent of it. Just more drawing, birdwatching, and puzzle-putting-togethering. One kind of funny thing - While we were in-patient Dad would come back to the apartment at night all the time. One night there was a snake sticking his head out between the bottom of the siding and the sidewalk by the apartment next door. Sort of a medium sized snake, maybe 3 feet long. I guess some other people saw him too because before long the gap was plugged up by spray-on insulation foam. Well, now he's back, but this time right outside our front door. Mommy's a little freaked but Spencer has really taken to him. He thinks it's hilarious and likes to go outside and say hello. And of course the snake is saying hello to us too. Maybe I'll put a photo of Spencer's critter friends up pretty soon (we've been taking critter photos lately - bugs, birds, squirels, snakes).

SOMETHING GOOD THAT HAPPENED TODAY:
Spencer rummaged through the Gramma Kristie box today (box with a bunch of little daily presents) and came up with a memory card game. A game where you put the cards face down and try to find matching pairs. He's got a Blue's Clues card game, Thomas, and now one with big trucks on the cards, not to mention some computer games with memory games on them, like Nemo. Let me tell you, you cannot beat Spencer. You can't. He has a memory like a steel trap. You could have 36 cards down there and he'll remember where each one is. You cannot beat him. He does have a little ways to go regarding strategy - like turning over new ones first instead of one he's already seen. But even with that you cannot beat him, try as you might. It's embarrassing.

Thursday, July 15, 2004 0:37 AM CDT

Day 70

The big Seven - O. Pretty cool. Still plugging along really well. We like to tick the numbers off but the big milestones are day 100, a sort of arbitrary number the doctors admit, but it's big as far as getting past many transplant related issues. The second (okay, 180 is big too) and bigger milestone is day 365. Kind of a ways to go 'till that one but it's gonna be big.

We had another long Dr K day on Tuesday, but it went well. We only had about 1 1/2 hours of IV meds to get and then we basically waited around for the other 6 hours. It's amazing how exhausted you can get after a day of twiddling around waiting. We are beat when we come home from our Dr. K days. Of course it's 8 PM by that time. I think Tuesdays are our official take-out food dinner days now.

We are getting to wean another ml per dose of steroids this week. We're down to 12 mg per day. Once we get to about 5 or 6 mg per day we'll be at a maintenance dose and some testing will be done to see where Spencer's own cortisol production is at. Spencer's doing so well we're starting to discuss things like when home IV meds might stop, when one of his central lines can come out, etc. These things are post day 100 and it's still day by day for now, but even discussing these types of things means things are going well.

We are down to two clinic days per week, and even down to two lab drops per week (on the clinic days). Dr. K is going to allow his platelets to drop lower too, which can often signal his body to start producing more on his own. His platelet transfusions are about 6 days apart now. And Spencer is definitley producing his own red blood cells. Hemogobin is up in the 10s and even 11s sometimes now. It's very possible he won't get any more red blood transfusions. That would mean he got a total of 3 the whole time at Duke. Last one was 45 days ago. I think the average is around 20 for a transplant. Good numbers.

Our biggest issue continues to be Spencer's skinned knee. It's still preventing him from wanting to walk or bend it much. But Wednesday afternoon he seemed to perk up a bit about his physical activity - walking a bit, playing trains, etc.. We can't wait until it heals. It's very unfortunate what affect something seemingly so minor can have on a kid like Spencer. It's set his physical progress back a couple weeks. That said, man is he showing the mental energy. He often won't nap at all, and he blabs all day long. Wednesday he did puzzles for a couple hours straight. Probably 15 or more. And he rips. He now races us. And with certain puzzles he can beat us. His thinker hasn't missed a beat and he really keeps us on our toes. But sometimes we wish we could borrow some of that mental energy just temporarily and put it into his physical energy so he could start to get stronger.

So, no changes planned. However, the weather man promises that it's going to drop into the upper 80s with way less humidity, and no thunderstorms. If so, we'll head to a park and fly Spencer's new rubberband-powered glider. The weather has been atrocious for the past couple weeks but the sky on Wednesday afternoon was something to behold. Huge huge huge puffy thunderstorms with brilliant white tops, orange and pink in the middle, and dark dark dark on the bottom, all surrounded by deep blue sky. Wow. Like a painting. Hard to top that one.

SOMETHING GOOD THAT HAPPENED TODAY:
Here's some more Spencerisms:
1. Every day he says "I wish Jared would get out of the hospital. I really miss him." And sometimes he almost starts crying. Of course he's speaking about his transplant buddy Jared, who on day 70 is still in the hospital waiting for engraftment. His cell count has been coming up a tiny bit but we wish they would get out of the hospital too.
2. When Daddy went outside to feed the birds: "You gotta be careful. There's gonna be a hummingbird fight and you better not get your head taked off."
3. With a hug and arm stroke: "Mommy, you made the best dinner tonight. And I love you." To which we reply that he is going to make some girl very happy one day (besides Mommy of course).

Monday, July 12, 2004 1:05 AM CDT

Day 67

(Check out the surprise in the Photo Album)

Another weekend gone by. This one was spent mostly in the apartment for two reasons: first, the weather is just too hot and humid, and that sun is way too dangerous for Spencer. We didn't quite get out strolling late in the afternoon on Saturday because of the thunder, lightning and rain that developed, but we did manage a nice long stroll on Sunday - late, like 7 PM. And the second reason is that Spencer fell down on the sidewalk and scraped his knee on Friday - just your normal minor toddler scrape - but it is really bumming Spencer out. He claims it hurts a lot and so he wont walk at all. And on Saturday night it caused him to go ballistic when we gave him a bath before his weekly dressing change. Sunday he sat on the couch from about 10 AM until we went strolling at 7 PM. We did a lot from that position though.

Spencer did go into clinic for some platelets on Friday. Saturday we just played with every toy and craft project in the apartment...again. This prompted Mommy to completely clean and reorganize the area. It was a big project but it is much nicer now. The place was really getting cluttered. There's only so many times you can step on one of Spencer's little race cars before you lose it.

Speaking of race cars, we turned on the NASCAR race today. Spencer was sitting there with all his little numbered cars. Every time he'd see a car he had, he would hold it up and say, 'Hey! This one!", or, "There's my car!". He's got the number 20 car, number 48, number 6, number 5, number 24, number 18, etc. etc. And again he had the cars that finished 1-2, Tony Stewart in number 20 (his favorite color car, but not his favorite car, and he says Tony is a dirty driver), and Jimmie Johnson in number 48 (his favorite). Don't laugh, but this has taught Spencer to dial in his big numbers. He knows them all up to 100 now, but don't ask him to count in order past about 20. By the end of the race Spencer was no longer interested, but Dad still was. We thinks Dad is more into it than Spencer now.

So that's that. More of the same. No labs to drop on Monday but we're going to call the clinic and discuss a couple things including this skinned knee deal. Already coming up on another Dr. K day on Tuesday. We've got a rhythm going now.

SOMETHING GOOD THAT HAPPENED TODAY:
We've been doing a lot of drawing and painting lately and Spencer has definitely started expanding his artistic talents. Saturday he drew a complete picture with all the elements - water and waves, Daddy kiteboarding complete with board, lines, and kite, plus clouds, the sun, birds, a rocket, and a jumping dolphin. I've scanned a couple and put them in the photo album. Check it out. On Sunday Spencer was excited to paint a nice mixed medium picture for his buddy Matt. We'll send that off to him on Monday (so if you read this Debbie, we need your new address).

Friday, July 9, 2004 0:07 AM CDT

Day 65

I'm starting to have to look at the calendar to see what day post-tranplant it is. That must be good news, either that or I can't count anymore. Clicking off the days, that's what we like to do. Already coming up on another weekend.

Tuesday was our longest Dr. K day yet at 7 hours but pretty productive. Spencer got his IVIG, then platelets, then albumin all one after another. It's always nice to get the IV meds on the Dr. K days when you know you'll be hanging around in clinic all day. Lisa, Spencer's physical therapist (see photo album for more new pics - gotta love those digital cameras) came by and worked with Spencer too. She said Spencer did pretty well. We finally got to see Dr. K around 6 or 7 PM and that went well also. No issues still, and she says Spencer is doing very well. The only bummer was she didn't let us wean the steroids this week, being on the cautious side. We are anxious to wean the steroids, but we understand the need to be cautious and take things slow. If any issue pops up we would likely have to increase the steroids, and probably not by a little. This would also likely mean weeks and maybe months of additional steroids. So lets take it slow and get it right the first time.

Wednesday we went in to get Spencer fitted for his leg orthotics (see photo album). Spencer likes to sigh and say this took a long time but it really didn't. It went fine. The orthotics will not allow his ankle to hang down, which stretches the muscle on the top of the foot, and shortens the muscle on the back of the calf. Instead it will keep his ankle at about 90 degrees, thus stretching the muscle at the back of his calf. This is all designed to counteract his drop-foot that was caused by the vincristine (chemo drug). It will also keep his ankle in proper alignment from side to side so he won't develop some strange walk to compensate for muscle weakness (caused by steroids). And the brace will make it difficult for him to snap his knees back into a locked position (which he does all the time now). This will help strengthen his thigh muscles and protect his knee from damage. We expect to get the braces back in a week or so (they're made in Seattle). Hopefully he'll take a liking to them. He got to pick out the colors and pattern for the straps and pads - dinosaurs and blue (they didn't have orange).

Thurday was a complete day off in every way. Dad didn't even have to drop labs. We just played all day - let's see - painting, reading, TV (of course), paper airplanes, Dora game, race cars, trains, blocks, backhoes and loaders, T-ball outside (but whoa is it hot, and humid, and stagnant), strolling, making apple pie (see photo album), foot rubbing, eating, and more reading. So, really, it wasn't a day off. It's tough keeping the kid entertained, especially when you consider we want to get some stuff done ourselves (yeah right!) and prevent him from watching too much TV (yeah right!). We've been racking our brains trying to remember silly little kids games we used to play as kids. We got a deck of cards and play slap jack, fish, etc. trying to get him interested in stuff like that. If anyone has any ideas, feel free to suggest them - we've got a several dozen more days like this ahead of us.

SOMETHING GOOD THAT HAPPENED TODAY:
It's nothing to get too excited about yet, but you can now feel pricklies on top of Spencer's head where hair is growing back in. And his eyelashes are coming in really fast. He used to have the most beautiful eyelashes. So now Mom and Dad are starting to talk about how much they're going to miss his cute bald head. We're getting in as many strokes and kisses on it as we can. Time to buy shampoo again soon.

Monday, July 5, 2004 0:08 AM CDT

Day 60

(More July 4th photos in the photo album)

We had kind of an odd 4th of July to go along with our odd life out here, but Spencer enjoyed most of it. We decided a few days ago, on some tips from the nurses at the hospital, that we would watch the fireworks from the top of one of the parking structures near the hospital. The plan was to have a picnic of sorts out of our minivan, thus avoiding the crowd and still being outdoors. The picnic ended up being, of course, cheese pizza that we cooked and then headed out the door with. We also had some marshmallows so we could act like we were camping, but we never ended up eating them.

Two problems: 1. It wasn't possible to get to the top levels of the parking structures. The roof parking is reserved for staff, and uses a different entrance and a card entry system. Whoops. 2. The fireworks show wasn't where we were told it would be. We figured this out because as we drove around closer and closer, there was nobody there. We looped back around and sent Mom inside the hospital to ask. Turns out the show was at the Durham Bull's baseball stadium downtown (we knew there was a show there but thought it was different), so off we went, not knowing where we could view them from.

It was crawling with people but by some stroke of luck we turned off at the right place and eventually made it to, ironically enough, the roof of a little parking structure. Some trees were in the way (I said it was a little parking structure) but it was uncrowded enough, and convenient. We ate our pizza and the show started. Lucky we left the apartment early enough to accomplish this Chinese firedrill. The show was pretty lame...no, really lame. There weren't any of the big booming fireworks, just oversized fountainy candle stuff. Most of it really low. Even Spencer was soon tired of it and wanted to go. Then the smallest thunderstorm in the world came by. Huge drops of rain started falling and people bolted for their cars, and so did we. Just then the finale (the lame finale) started. 30 seconds later the finale was over and so was the rain. We were already rolling and made a miracle escape, leaving a huge traffic nightmare behind.

We decided to go light off our $20 worth of fireworks (sparklers and little fountains) in a church parking lot close by our apartment. It was very cool, Spencer had a good time, and we went home, with fireworks to spare. And that's that. The real fireworks were actually on the night before. We had some nice thunderstorms with beaucoup lightning go right overhead. Two or three times the flash was simultaneous with the crack of thunder. We even opened the sliding glass door out to our patio for sound effects, and to scare the wits out of ourselves. But remember back in April when Spencer was screaming his head off he was so scared? Well he's come a long way. This time Mom and Dad were shaking, but Spencer was going, "whoa!! - That was a big one!!", then squealing with laughter. Go figure.

Otherwise, it's hot hot hot, humid, humid, humid again. And Spencer is doing well, tired a lot, but doing well. We haven't been to clinic since Wednesday. The only bad thing was when Spencer caught his toe on the carpet while he was walking and rolled his ankle underneath him. That was awful. It's happened three times now but this one was the worst. It seems he might have some ligament damage this time as it hurt him a lot, and set his walking abilities back probably a couple weeks. We need to get those leg braces going. It's hard, and sad, to see your kid like this, but we have to deal with it. And unfortunately it's nowhere near the top of the list of our major worries.

SOMETHING GOOD THAT HAPPENED TODAY:
Thought I'd write down some of Spencer's cutest phrases, that he uses all the time:
1. What he says when he first wakes up: "I was dreamin' 'bout a cheese pizza."
2. Big sigh, "hhhhhuuuhhhhh", followed by, "I think I'm a little bit tired." Translation - "I'm full"
3. For Mommy - "You're a beautiful Mommy. And I love you."
4. For Daddy - "You're a good Daddy. You make good cheese pizza."
5. "I'm going to keep both of you."
6. Mommy coughs - "Mommy! - you gotta cover your mouth. That's bad manners."
7. After Saturday's thunderstorms - "Those thunderstorms were almost a disaster!" (background - We just finished a stroll around the neighborhood less than one minute before it started to rain. And it was Daddy who reassured Mommy there was no problem. Meaning that it would have been a disaster for Daddy if we were strolling in a lightning storm. Lucky Daddy.)
8. The newest, and Daddy's favorite - "Mommy, I think you're gonna have a hot flash."

Wednesday, June 30, 2004 9:58 PM CDT

Day 56

"Gazing at people...
Some hand in hand.
Just what I'm going through...
They can't understand"
Moody Blues - Knights in White Satin

Remember them? No, we don't have any Moody Blues albums lying around the apartment, but if we did we'd probably put them on... until Spencer told us to turn it off, which would be after about 30 seconds. "Let's put Dragon Tales on."

So we keep clicking through the days. Tuesday was finally a super nice day, but it was also our Dr. K day so we missed it. It was raining again on Wednesday. Our Dr. K day was pretty long, 6 hours, but it was good. Spencer had a blast in the Rainbow Day Hospital, if that's possible. First he "played" with Lisa, his physical therapist. (Little did he know she was actually working on him. She's great.) Then he played with Mary Margaret, who comes in all the time with crafts projects. Spencer has been eyeing her and her stuff for a while but this was the first time they had gotten together. They put together a foam snake to hang on the window with a suction cup. Spencer thought it was great. Dr. K would walk by occasionally and Spencer would be giggling and squealing with delight, laughing at who knows what. That was probably all the information she needed to assess his condition. Pretty cool.

Lisa and Dr. K got together and agreed Spencer should be fitted with orthotic leg braces to counteract the physical problems he's having. He has severe weakness in his leg muscles and probably some joint/nerve issues as well. Much of this seems to be left over from the intense reinductioin he went through at Stanford. He cannot step up even a 2 inch step. He can't get himself off the floor without a chair nearby. And his knees are bending (hyperextending) 20 degrees beyond normal and his right leg is rotated outward abnormally. He's doing this, and other awkward things in order to compensate for his muscle weakness. If this isn't controlled he could have more severe permanent problems. The braces will be molded to Spencer and he'll probably wear them for 6 months or so, in order to force him to move correctly. As the steroids are weaned his muscles will get stronger again, so with the braces he should be guided in the right direction automatically. At least that's the idea. We're going to have an appointment to get the braces fitted soon. They have to set it up so no other kids are in the doctor's office.

Transplant-wise, Dr. K is very happy with Spencer's progress. He is right on schedule for what they hope to see, and better yet, has no additional issues like GVH. He is doing as well as they can ask of him. Platelet transfusions are 4 to 5 days apart now, and his hemoglobin is holding between 9 and 9.8, meaning he's making his own red blood cells. He could still need a transfusion but he's only needed 3 red blood transfusions since we've been at Duke. This is an incredibly low number for a transplant patient. Dr. K also said we are likely out of the window for serious (life-threatening) GVH (graft vs. host disease) which, besides infection, is the main concern of making it through transplant. Chronic GVH can still pop up at any time for quite a while, but so far so good.

So clinic appointments are getting further apart but we recently got into an unfortunate pattern, which should end tomorrow (Thursday). Monday we had to go to clinic for magnesium (they didn't want to wait until Tuesday), Tuesday was Dr. K day, Wednesday (today) his platelets finally went below 20 so we had to go in, and his magnesium is already down again so we'll likely have to go back in Thursday - 4 days in a row. It's obviously a bit unpredictable. Once we get out of this little stretch we'll only be dropping labs every other day.

Just guiding our little buddy back to proper health, one day at a time.

SOMETHING GOOD THAT HAPPENED TODAY:
I just don't know where these big leaps are coming from. We have a bucket of those giant Lego-sized interlocking plastic blocks, megablocks or something like that. Pre-transplant he'd put together these ridiculously top-heavy, out of balance structures that pained Dad (structural engineer by training) and any unfortunate bugs that happened to be underneath them when they toppled over. Monday he decided to pull the blocks out and, without Mom or Dad even in the room, put together a beautiful skyscraper complete with overhangs, cantelevers, and tunnels, using every last block. And it's solid as a rock top to bottom. It's still standing.

Saturday, June 26, 2004 11:13 PM CDT

Day 52

Spencer is doing very well. Platelet transfusions are getting slightly further apart, which is making our clinic visits even less frequent. We're down to about 3 days a week now, possibly even two this week. Tuesday is our mandatory day and then just "as needed" depending on Spencer's labs. Friday he got platelets and Saturday's level was at 79, about as high as it's been since February. We may not have clinic again until Tuesday, even though we still have to drop labs every morning.

Spencer's appetite is still pretty iffy. He seems to want to eat quite a variety - hot dogs (soy dogs, sorry Grampa Ernie), cheese & crackers, pizza, mac & cheese, banana, cereal, etc., but he will often only manage 5 or 6 bites. We have to offer food more often to counteract this. But we're not really worried about it yet. He's got some pounds to spare for now.

On Saturday Spencer was super tired. He pretty much just sat on the couch all day. This was okay with Mom and Dad because it's been a pretty emotional week for us, so chilling out in the apartment was just fine. This past week two kids we know relapsed post-transplant (our friend Ben and another kid from Mom's online support group), and another just relapsed 1 year after being off frontline treatment. This kind of news is so overwhelming that it just stops you in your tracks. Emotions that you put away in order to get through transplant come rushing back. It makes it hard to think clearly or even function. Spencer has done so well, and because of that we're getting some more time to relax and reflect. And one of the hardest parts...no, THE hardest part about going through this whole experience is trying to keep focused on the task at hand, control your mind, not get all self-pitying, and not get caught up in the why's and what if's. It is so destructive and pointless, but being cast adrift all alone far off in some unfamiliar place hour after hour, day after day, week after week, month after month with nothing on your mind except for intense medical issues and the little person that you love most in the whole world - it's a constant mental battle not to go there. That's what kind of week it's been.

So to pass our nice slow rainy Saturday, Spencer got Mom and Dad a mind-boggling 500 piece jigsaw puzzle. Spencer loves the bird store down the street where we get all our feeders and seeds, and since there's never anybody in there it's someplace he can go. He loves all the bobbles and doodads in there. Last time he saw a nice puzzle with a photo of a cardinal on it, and he's been talking about it ever since. So we thought we'd go let him get it for us. But, since we recently put up a hummingbird feeder, he decided to get us the hummingbird puzzle instead. Well, it was very very very difficult to put the pieces together of the hummingbird and flower. But after that we had about 200 pieces left that all looked the same and were all the exact same shade of nondescript, out of focus, background green. Just what we needed, another mental nightmare. Good thing Spencer just layed around all day, because it took us all day to do the rest of the puzzle. It was great. We haven't done something like that for years. But we might give it a rest for a while now.

Thanks to everyone who has sent well-wishes for Spencer, be it in the guestbook, email, snail mail, phone, whatever. We really appreciate it.

SOMETHING GOOD THAT HAPPENED TODAY:
I know there was some heavy stuff in the update today, but there is some really good news. Spencer's transplant buddy, Jared, who I mentioned last week, is getting some more white blood cells going. Of course Jared is also day 52 post transplant, but he (and his Mom and Dad) have spent nearly all of those days in the hospital watching his white count fluctuate between zero and 0.1. But this past week his count has bounced higher off and on, and is now at 0.4. It really looks like it's starting to take off and we couldn't be happier for them, particularly because the results of the bone marrow aspirate that was done last week showed 96 percent donor cells. Very nice. We look forward to seeing them in clinic soon.

Tuesday, June 22, 2004 10:49 PM CDT

Day 48

Only two more days to Day 50, if that means anything. We like to count. Spencer is still doing very well. Today was our Dr. K clinic day, but again, she's not there so Dr. Parihk is seeing us. It went very well and we were there for only a couple hours. We got to drop the lasix medicine completely, weaned some blood pressure medicine and got another wean from the steroids. A few days ago Spencer's GCSF (white blood cell growth factor) was cut back to every other day as well. So we are getting rid of meds, which is great.

Spencer's appetite is cooling off somewhat. He still eats often, but sometimes not much. That has us off and on concerned but the weaning of the steroids could be causing this as well. We think his prednisone belly is starting to shrink. And the big news is he has some "dirt" above his eyes. That's his eyebrows starting to grow back in. He also has some tiny tiny fuzz going on his head. So a little early to start thinking about Dad and Spencer haircut days, but it's a start.

Tomorrow (Wednesday) we all get a complete day off. Dad doesn't even have to draw blood and drop labs off in the morning. So you know we will all be sleeping in together for the first time in 2 1/2 months.

And today we went, on a tip from a windsurfer friend from Raleigh - Roger, to the observation park at the airport. It's a really cool deck where you can watch the planes come and go, open air and very uncrowded, far away from the terminal. Perfect for us. It was great, except for this one building that was totally in the way of the view of the landings. So Kerri trots down there to ask if Spencer could come in the building and get a better view of that part. The guy was super nice and gave us a private tour of the hangar. It turned out to be the Dept of Transportation where they house the state's jets and the Governor's helicopter - North Carolina's version of Air Force 2. We got to go in the Citation jets and the helicopter, which was insane - a huge 6 seater helicopter limo. Unbelievable. Super cool. The only catch? - by this time Spencer was a full-bore steroid-fueled pill. He just wanted to go in his stroller, where he sat with the grumpiest face he could muster and said stuff like, "Everything is STUPID!", "Let's GO!", "Let's go back to the APARTMENT!". Can you say embarrassing? It was a very negative way to end what could have been a great experience. But the guy, Rick, was super great and invited us to come back whenever Spencer felt up to it.

SOMETHING BAD THAT HAPPENED TODAY:
This was just so heavy that I had to cancel the normal headline. Days like Monday just remind us what sort of hell world we are now forced to live in. Late last year Spencer's picture was printed in Windsurfing Magazine, along with his story. That caught the eye of Jody Murphy, a longtime Bay Area windsurfer who's son had AML, and had a bone marrow transplant at Stanford. She was surprised she had never seen us there. Well it wasn't long before we ran into her and her son Ben (4), who was doing great. And we became friends. She really gave us some good confidence when we were confronted with taking Spencer through transplant. Well Monday, with no warning, they got the horrible news that Ben had relapsed, 14 months post transplant. Since Kerri has done so much research on transplant centers and transplant types, Jody called us. Jody is now making some contacts and hopefully she will be able to find a course of action. The weight of the world is on them, and we are crushed too. There are no words.

Saturday, June 19, 2004 1:52 PM CDT

Day 45

Yesterday, day 44, Spencer had another graduation of sorts. It was our last mandatory daily clinic day. And it was less than an hour visit because Spencer had platelet and magnesium transfusions the day before. So we are really ripping on the clinic front. We expected to leave there with a schedule of 3 or 4 days a week that we had to go to clinic, but we didn't even get that. The only mandatory day now is Tuesday, Dr. K's clinic day. The other six days we just drop labs off in the morning and they call us if we need to go in for anything. It turned out to be a pretty big leap.

Since platelets are the only thing Spencer seems to need consistently it's pretty predictable when we're going to need to visit the clinic. His level was at 63 yesterday, 31 today, and he needs a transfusion if it drops below 20, so we know we'll be going in for platelets on Sunday (Father's Day of course). But platelet transfusions are fast so it's no big deal. And we know we'll be going in for them every 2 to 3 days for a while.

Spencer's diet has continued to get a bit more varied. He's branched out to fish and bean dip again, even downing some watermelon and yoghurt the other day. But his favorite is far and away still cheese pizza. His energy level has been improving too (even though he's napping as I write this). He's been in very good spirits the past few days and we've been doing lots of painting and playing around the house, plus doing our evening strolls. Now that we have more time in the day we're thinking about adding some more stuff outdoors, although the heat continues to be oppressive so we're kind of limited there. It's supposed to be nicer on Sunday. In reality, Spencer is happy doing whatever, inside or out. It is making our time out here actually very enjoyable, now that he is laughing and smiling pretty much the whole day through. Thanks so much for stopping by.

SOMETHING GOOD THAT HAPPENED TODAY:
In our last update we mentioned about Spencer's transplant buddy, Jared , who had his transplant within five minutes of Spencer, but has not engrafted yet. Yesterday Jared's white count crept back up to 0.2, which is certainly not a big number, but they got the results of their bone marrow aspirate which showed 96% donor cells in the marrow. That is fantastic news and it's now just a matter of time for the cells to start taking off. We are very happy for them and can't wait for Jared to get out of the hospital too.

Wednesday, June 16, 2004 10:55 PM CDT

Day 42

And we thought it was humid before. The whole family has bought snorkels now for when we go outside. It's actually not that bad, it just seems out of place. We're more used to this weather in places that are a bit more fun, like Oahu, the Dominican Republic, or Fiji. Durham is really lacking in white sand beaches, palm trees, and perfect barrels. They need to do something about that.

Spencer is still doing well. His liver enzymes went down a tiny bit to around 550. "Stable" would be a more accurate word than "down". We're hoping he's peaked and will continue a downward trend. Today (Wednesday) was a record clinic day - only 1 hour and 10 minutes and we were out of there. This was because Spencer didn't need anything so we just had two brief conversations with Barbara, our NP, and the nutritionist. Yesterday was our Dr. K clinic day, but this week and next are her two weeks on the floor at 5200 so she's not in clinic. We saw Dr. Parihk instead and it was pretty quick at only 3 hours. Not as many post-transplant checkup patients are scheduled when she's not in clinic. And Friday should be our last mandatory "every day" clinic day. After that we'll probably get scheduled for certain days, plus drop labs in the morning daily and get called if Spencer needs anything. Bottom line is we should get some days off after Friday.

We spend the rest of our time trying to keep Spencer as motivated to do fun things as possible. The apartment is getting a bit cluttered with plastic Chinese crap but it seems to be working. Spencer gets winded in about 15 minutes of just light playing or standing. We have a lot of fun and then his big patented sigh comes out, "(big breath) hhuuuuuugghhhhhhh, I'm tired". Then he climbs back up on the couch. We have to let him set the pace but we are very concerned about bone weakness and muscle atrophy caused by the steroids and inactivity. It takes a lot of effort when we're always sleep deprived but now is the time to be proactive. Speaking of steroids, we did get to wean our dose again on Tuesday to a total of 20mg per day. If we can keep going at this pace we could be down to a nice side-effects free dose in 4-5 weeks. The steroids are necessary to keep graft vs. host disease at bay. During the weaning stage there is the danger that some GVH could pop up. In that case we would have to stop weaning and most likely increase the dose.

And the longer we stay in North Carolina, the more we get assimilated. Spencer is all into NASCAR now, with the Jimmy Johnson Lowe's #48 car being his favorite race car. He also likes Jeff Gordon's #24 car, Bobby Labonte's #18 car, and Tony Stewart's #20 car (but only because it is orange). He recognizes the cars on the TV during the weekend races (not that we're watching them or anything). He'll point at #20 and say, "That's the orange car I have. He runs people off the road." - refering to Tony Stewart's dubious reputation. In fact, some pit crew guys from Hendrick Racing came by the hospital over the weekend and visited Spencer in clinic. They were super cool and even gave Spencer a nice hat and a 1/24 scale miniature Jeff Gordon car, which has like a $60 retail value. The guys who visited Spencer worked with Jeff Gordon and Terry Labonte but when Spencer told them #48 was his favorite car they went and got the two #48 pit crew guys to stop by and say hello too (all those cars are with the Hendrick racing team). Not coincidentally Jimmy Johnson won the race at Pocono the next day. He has Spencer to thank for that. Hendrick racing visits the pediatric transplant units often and is a huge fundraiser for Duke and other transplant hospitals. Plus they do a lot of work for increasing the size of the national bone marrow registry. Their headquarters is a few hours away in Charlotte and we'll take Spencer over there to see the race cars either at the end of our stay in October, or when we come back for checkup depending on what Spencer is able to do. Big thanks to the Hendrick guys. Racing is nice, but we've got to get Spencer back to Cali for some surf before he picks up a more expensive (and noisy) habit.

Finally, all during workup to tranplant we kept seeing the same family over and over, doing the same things at the same time as we were. Turns out they WERE doing the same things we were, to the tee. We were on the exact same radiation schedule, got admitted to 5200 on the same day, were two rooms apart, and had transplants within 5 minutes of each other. Kind of bazaar. We couldn't help but become friends. Jared is Spencer's transplant buddy. While we were in the hospital Jared's mom Lynn would sometimes take walks with Kerri, and Brian took in a couple Laker games with Jared's dad Don in the parent lounge. You can see Jared and his mom throwing a pile of confetti on Spencer in the parade photo at the top of the page. We really wanted to take Jared (also a NASCAR fan) with us when we left, but he is taking a long time to engraft, being stuck at a white count of 0.1 for quite a while now. He is still doing well and in good spirits but if anyone has some more GROW CELLS GROW chanting left in them, Jared could sure use them. Thanks.

SOMETHING GOOD THAT HAPPENED TODAY:
Maybe this should be under the heading of "something good that happened while we were here". One thing that has surprised us, considering how Spencer was with his medicine while getting frontline Chemo at Stanford, is how well his is taking all this transplant stuff. Spencer was fairly good with his meds at Stanford but now he is just plain amazing. He takes all of his oral meds by himself now. He can say "solumedrol", "voriconizole", "steroids", and "heparin", and uses them all correctly (take that, all you healthy kids in daycare). He helps hook up his pumps and flush his lines. He reminds us if we forget something. He makes sure he has his mask on when we go to or from the clinic, or if it starts getting windy, or we near a construction site or somewhere dusty. He makes sure we brush his teeth and do the other mouth care stuff after his cheese pizzas. He makes sure we give him his floride and his multivitamin every morning. He is making all this a lot easier than it might otherwise be. Two words - amazing kid.

Sunday, June 13, 2004 7:49 PM CDT

Day 39

Auntie Kendi and Cousin Kelly blasted up from Florida for the last few days to help out. They just left early this morning. Of course Spencer isn’t the picture of high energy but he seemed to gradually get perkier and perkier the past few days while Kendi and Kelly were here. We all did a lot of sitting around watching Dragon Tales on TV but Spencer loved it. Unfortunately Spencer told them (with a smile on his face) he wasn’t going to miss them when they left, but now that they are gone he says he misses them. So as nervous as we were to have visitors so soon after transplant everything was great and it sure helped to break up the monotony around here.

I don’t know how our lives can be so boring and so hectic at the same time. Daily life includes getting up early to draw Spencer’s blood and drop it off at Duke, start the morning 2 hour infusions, make the cheese pizza, get ready to go to clinic, go to clinic, wait and wait and wait in the clinic, do our stuff in the clinic, get another cheese pizza, go home (maybe for a cheese pizza there if we got out early), go for a walk late in the afternoon, start the evening 2 hour infusions, make a cheese pizza, squeeze in eating or some business stuff, go to bed ready to start it all over the next day. Our 7 day per week clinic visits are to continue through day 45, so after next weekend we may be able to take some days off to catch up on things. The weather has gotten a bit cooler, thankfully, which has made our walks around the neighborhood each afternoon more enjoyable. We got some nice thunderstorms the other night, but the screaming coming out of Spencer was much louder than the thunder. They were gone very quickly.

Spencer continues to do very very well. We do have one issue that is a big concern but we can’t do much now but watch it. A couple of his liver enzyme numbers have been steadily climbing for over the past week. Normal is between 10 and 45 and his alanine aminotransferase has gotten up over 650. For normal oncology or other health issues that is an astronomical number, but apparently not for the transplant team here. You might imagine the serious issues that might arise from taxing the liver too much. It’s suspected that it is medicine related but Dr. K won’t do anything about it until the number gets over 1000 (yikes!). The medicines are all very important and I think they’d rather not have to mess with them as that might introduce other risks. Other courses of action at that point could include a liver biopsy, which we want to avoid. The good news is that GVH (graft vs. host disease) in the liver with a cord blood transplant is very rare. Also, it apparently is not uncommon for these liver enzymes to rise in a certain percentage of patients post-transplant. Most often they will peak out and then drop without anyone ever knowing why. It has been bouncing up and down. It went down from 641 to 530 yesterday, but is back up to 650 today. We are anxious for this to drop.

One other note; as Spencer's donor was blood type B positive and Spencer was O positive his blood type will change. We were wondering when this might take place and since he is cranking out the white blood cells and the red cells are holding their own it seemed to us it should have changed already. But his blood type screen last week showed he was still O positive. They do the screen a couple times a week. Low and behold the last screen showed B positive. So somehow in three days the screen came back with a different blood type. This stuff is bazaar.

SOMETHING GOOD THAT HAPPENED TODAY:
Ever since we introduced Spencer to the fireflies he is excited for it to get dark every night. These are the things that he had to say about them after that first night (besides, “oooooohh”):“Those are the best thing ever.”, “They are very beautiful.”, “I never seen them before.”, “They’re like magical shooting stars.”, “I love them.”, “They are coming to say hello.” He’s pretty funny. The steroids are always implicated with making kids super crabby and demanding, but they also affect the other end of the spectrum by making them super sweet and sensitive. Spencer has more affect on the sweet side from the steroids and seeing the fireflies definitely flipped the switch in that direction. Sometimes the sweet things he says are harder to take than when he gets crabby, because he makes you reflect on how crappy this situation is and the things he’s missing out on, like when he says he misses the beach, his friends Matt and Sean and Roxy, swimming, camping. But he never says it in a depressed way, which is why I put this under the “good things” heading instead of being bummed about it.

Wednesday, June 9, 2004 10:24 PM CDT

Day 35

First we'd like to thank everyone who went to the blood drives in Spencer's honor - the one last week in Cambria and the one today in Morro Bay. We heard they were very well attended. And we know that giving blood, and particularly getting turned down trying to give blood, can be a slow and frustrating process, but it's worth it. We hope everyone feels good about their efforts. We do.

So we are all adapting to our new out-of-the-hospital daily life. Clinic visits are definitely slow and long, averaging between 3 and 6 hours depending on Spencer's needs. But they are not so bad, and Spencer has been great about it, just as long as a fresh cheese pizza is nearby (he ate three whole ones today). Tuesday was our first Dr. K clinic day - and the first time we've seen her since our first week inpatient. It went very well and she is pleased with Spencer's progress, of course. But, and for good reason, she is very cautions and warns there could still be bumps in the road. We all still knock on wood when discussing how well Spencer is doing, including Dr. K.

Other than that there is not much new to report, and we hope to keep it that way. Spencer's home IV and oral meds have become more routine, and all we've needed at clinic is occasional platelet and magnesium infusions. Tuesday marked another slow wean in his steriod dose, and GCSF (white cell production stimulant). We are counting the days until his steroid dose gets small enough to make us all happy.

We've noticed some remarks in the guestbook about how quickly it seems that Spencer has reached this point, from relapse to reinduction to completing his transplant and getting out of the hospital. And everyone is correct, it has been fast and I'll quickly elaborate, as that was our plan. First off, Kerri knew our treatment options even before relapse from her hours of research, doctor conversations, and from our cyberfriends on the ALL Listserve who've been through the same thing, in particular Alex Schwab and Isaiah Bingham, both Duke transplant graduates. After that we have Duke's Pediatric Stem Cell Transplant program, and Dr. K in particular, to thank for this. Not only does Dr. K have T-cell ALL specific knowledge, but she knows how urgent a transplant is in case of T-cell relapse. She put us on the fast track to get here way before Spencer got back into remission at Stanford. Also, because it was a cord blood transplant, we were able to take advantage of the lightning quickness of finding a suitable cord blood donor, with none of the delays that occur with the more typical live bone marrow donor situation. And once we got to Duke, their workup to transplant was an incredibly well-oiled machine. We went non-stop every day, bing, bang, boom, without a hitch through all the tests and radiation right into the hospital. Finally, the triple punch of a high cell-dose cord, with Spencer's chemo-thrashed marrow, with Spencer being one tough hombre, he engrafted very quickly and we got out early. So there are your reasons if you feel things have happened fast. But we're still in it for the long haul with a lot more work to be done. It's been great to get this far this fast, mostly from the standpoint of beating his disease. Now we are on the slow and methodical climb back to health after transplant. Please keep pulling for Spencer through the long haul, and all the other transplant kids out there.

SOMETHING GOOD THAT HAPPENED TODAY:
Spencer is going to bed early lately, around 8:30 (that's early for him), even before it's totally dark. And after he went to bed last night we discovered one of our favorite things in the world. So tonight after his IV infusions ended we got him out of bed and went outside to show him the most magical of sights - fireflies (or lightning bugs), hundreds of them hovering in the woods just a few yards away. He has never seen them before (heck, Mom and Dad have only seen them once or twice, not counting in Disneyland's Pirates of the Caribbean). There was also a chorus of toads, crickets, and cicadas. It was amazing. We can't wait to hear what he says about the fireflies in the morning.

Sunday, June 6, 2004 11:15 PM CDT

Day 32

See top of page for info on the Morro Bay blood drive.

Spencer continues to do very well and is truly happy to be out of the "yucky" hospital. He's been eating like a horse, not skipping meals like Smarty Jones must've done. Spencer is now eating an entire small personal cheese pizza at every meal. This morning he ate 6 pieces, which amounted to about 1/2 of a medium pizza. He ate so much he seemed to complain about it. We were even a bit worried, but the doc's and NPs say this is a great thing and don't worry. He's put on a couple pounds since we've been discharged. He's up to a steroid assisted 42 pounds. And we're off the IV nutrition, which is a big help at home.

Clinic visits have gone as advertised so far, but the weekends are very relaxed. Friday, our first clinic day, we were put in a windowless, TVless 8 x 10 room with two hard chairs and an exam table. We were in there with our 3 year-old, unable to come out because we're in isolation, for 3 1/2 hours before someone finally looked at Spencer's labs and said he needed platelets. We eventually had to turn the lights off to get Spencer to take a nap, which he did. Then there was a couple more hours in the day hospital for the platelets and doctor exam and we got to go home. Saturday and Sunday you get to go straight to the day hospital and it goes pretty smoothly, although Spencer had to get some IV stuff so it still took 3 hours each day. Should be some more long ones coming up Monday and Tuesday. It's a lot of work trying to keep Spencer entertained but he has been super super good about everything.

The question about the clinic is: do you try to show up early, like 9 AM, and hope to get out early?, or do you go later, like 12 or 1 PM and hope to avoid getting stuck all day? No one knows. Our mornings are a bit hectic. We have to draw blood for labs and drop it off at the clinic between 7 and 9:30, plus start and complete Spencer's two 2 hour infusions (we don't exactly want to go to clinic with him hooked up to his pumps). With all this, plus oral meds, getting ourselves ready, and of course making Spencer's personal pizza, there's no way we'll ever get to the clinic early. So instead of killing ourselves, we just have to plod on with the morning and try to get to clinic by 11 or 12 and hope for the best.

SOMETHING GOOD THAT HAPPENED TODAY:
One issue that is really important for us is physical therapy. Spencer is very weak and still cannot walk very well, which is cumulative effects from 3 months of inactivity, the transplant, and a really hard hit from reinduction at Stanford. We've been trying to get Spencer some activity to help with this, but with his clinic and medication schedule, his tiredness, and his restrictions, it's hard. Even with the inactivity and lack of socialization Spencer has not missed a beat developmentally. Just before relapse Spencer was still not too good at throwing or catching a ball. Now all of a sudden it's easy for him. And today he took his little basketball and threw it into his plastic hoop from about six feet out like a pro...well, at least like Shaq at the free-throw line. Over and over again he was going glass or swishing. Pretty cool to see. This was part of a nice hour of activity where we played trains, catch, soccer, and basketball. We're hopeful that this kind of stuff will lead to improvement.

Thursday, June 3, 2004 11:25 PM CDT

Day 29

We're out!

At 12:20 PM or thereabouts we busted out of the hospital for good. We immediately took Spencer for some of his favorite ice cream (soy ice cream of course) - chocolate coconut. He ate it all up, or as Spencer says, "Daddy, I powered it." We took a little stroll at Duke Gardens, then we got a cheese pizza for back at the apartment.

It's a huge relief walking out of those double doors at 5200. It brought back memories of walking in just 35 days before, when we were filled with so much hope, uncertainty, and fright all at the same time. Now we're on the other side, hoping that all the other kids in there will not be far behind. We wanted to take them all out with us. Under such trying circumstances, it was amazing how warm and nice everyone was, from the patients, to the parents and caregivers, nurses, doctors, and all the supporting staff. It's what keeps the whole place together. Thanks to everyone.

Overall, Spencer ripped through transplant better than anyone could have imagined. We always thought that absolute best case scenario we'd be getting out of there between day 28 and 30, and that's exactly where we were. But we never thought he'd be doing so well at that time, even probably able to have been discharged 4 or 5 days earlier. Both we and the doctors played it very conservative with that, which is great. We didn't set any records getting out of there but we never wanted to. But time to engraftment, and the subsequent white count climb, and 100 percent donor result, well that had everyone floored. We are so grateful for this, and it seems Spencer was truly blessed.

Unfortunately there was one glitch at the very end that has thrown us for a loop. I think we are coming to grips with it now, but it's kind of an odd and depressing deal. We came back from pass on Tuesday night, just one day and two nights from discharge, to learn that we had been put on isolation. Apparently Spencer's rectal swab had come back positive for VRE - Vancomicin Resistant Enterococcus. The doctors and nurses said of all things that can put you in isolation, this is one of the least bad ones, especially post engraftment. However, it is a bug in the stool that is resistant to antibiotics. And since Spencer is only colonized, not infected or in the bloodstream, they will do nothing, in fact can do nothing, to get rid of it. It gets worse - it may not go away...ever. VRE is a hospital-spread bug that has become resistant to antibiotics. It is becoming a national concern, along with any bug that has become resistant. It is spread though contact, often by hospital food services. VRE can cause big problems in seriously immunocompromised people, like transplant patients or elderly people with various conditions. It may disappear and it may not. It should be a non-issue within 2-3 months for Spencer, but it now means that we are on isolation at Duke, in the hospital, in the clinic, forever, meaning no contact. Even at other hospitals...forever. We are totally bummed about it and I'll elaborate about isolation itself another time. Maybe if Spencer gets 3 negative cultures in a row we can get cleared, but since there's nothing much we can do to get rid of it, that could be tough. It pretty much put a bit of a cloud over our confetti release party.

Once we got back to the apartment the whirlwind started. We now are in the process of learning to become nurses. For now Spencer's got 4 two hour IV infusions per day, one 12 hour infusion, a couple smaller ones, and about 6 oral meds twice a day. All these are strictly timed and we've got to get it all right, along with food, mouth care, bathing, catheter care, physical therapy, and long clinic visits. Not to mention regular life, like the business, laundry, eating, showering, cleaning, cleaning, cleaning, and..oh yeah...sleeping. Nah, don't need that one. It's going to be tough for a bit. And we probably have it pretty good as Spencer is not on any antibiotics and doesn't have any issues at the moment. Here we go.

SOMETHING GOOD THAT HAPPENED TODAY:
See first line.

Tuesday, June 1, 2004 1:03 AM CDT

Day 26

Sometimes you just run out of words, so here's a few thousand in these new transplant photos.

We've now had 5 passes to the outside world in a row. The past 3 days have been for four hours (that we somehow seem to stretch into 5...whoops), during which we've been going back to the apartment. Spencer has really enjoyed these outings, and it's good to see him perking up and walking around. This has also really given us the confidence to handle things on our own when we do get officially released, which will be either Wednesday or Thursday. We're still doing some training for the infusion pumps but we are definitely ready. It's really exciting to get discharged but we are now heading into the dog days of transplant, where you are required to go to the clinic 7 days a week until at least day 45. After that it's up to the doctors how often you go in. Problem about that is - everyone you ever talk to, and I mean everyone, has never-ending praise about every aspect of the Duke pediatric transplant program...except for one - how the outpatient clinic is run. There are no appointments and it's somewhat first come - first served. Everyday is unpredictable but we will expect to be in clinic between 4 and 8 or even 10 hours per day, most of it spent waiting. We are hopeful that Spencer will tolerate the waiting, and that he continues to do well so we can get some breaks from clinic days soon. We'll see, but this all starts Thursday or Friday.

For now Spencer continues on his great pattern. His white count is over 10,000 and he is really starting to eat. Today he had a PBJ sandwich and nearly 4 slices of pizza. Cheese pizza is now the food of choice and fortunately the cafeteria has some pretty dang good pizza. The more he eats the sooner he'll be off the IV nutrition, which will be good for him and make our lives a lot easier at the apartment. And of course we're still giddy about his 100 percent donor cell results. We are just so proud of Spencer. There is still a long way to go, but getting off to a great start is key and he has just been amazing. I know it's not something anyone would want their kid to go through, but most parents probably never get to see their sons or daughters achieve something so monumental. On this Memorial Day, here's to ALL heroic transplant kids, past and present that give us all hope for the future.

SOMETHING GOOD THAT HAPPENED TODAY:
On Sunday we took a stroll through the University of North Carolina campus (don't tell the Duke people). That campus is amazing. Quite humbling for these Californians. It was the first ever state university and many of the buildings date back to the 1700s. Just the sheer history oozing from the buildings made us feel small. We figured counting all the bricks on the campus would help Spencer learn to count really high. He seemed more interested in all the squirrels though.

Friday, May 28, 2004 2:03 PM CDT

Day 23

Well this is mom here updating for the first time...We are going to make this whole journal entry about "SOMETHING GOOD THAT HAPPENED TODAY." Let me digress. It all started yesterday afternoon when we got our first pass to visit the outside world again with Spencer. We talked to him about getting a cheese pizza and heading to Duke Gardens for a picnic. He was so excited to go, he kept trying to get the party going all day. We had to wait for the TPN to finish and then a lengthy meeting for some training in outpatient care for when we are discharged. We finally headed out the door at 5:00. The weather was perfect - blue sky, warm not too humid - it was wonderful. On the way to the gardens we saw train cars, a police car, helicopters and a fire engine (the firemen even waved at Spencer). No emergency, they just happened to be in the neighborhood. Spencer was so excited pointing and talking about everything.

Then we got to the garden and spread out our picnic. Spencer ate two pieces of cheese pizza and drank some apple juice! The moon was out and a bunny rabbit. Spencer has been fascinated by the moon since he was about one year old. He admired the magnolias. Then the baby ducks came by and we fed them, the turtles and the catfish our pizza crust. In one hour and a half, we saw all of Spencer's favorite things. From fire engines to bunny rabbits and turtles! It ws perfect - almost magical. We walked back to the hospital high on life.

Then this morning it just got better. Spencer is doing so well - WBC 7000, ANC 5950 - that Brian was able to get his catheter out, since Spencer no longer needs granulocytes. Dr. Prasad and Barbara our NP were at the door at 8:30. Normally you don't ever want to see the doctors come in unexpectedly. But they also called Andria our primary nurse, who was starting to wonder what was up, over to join the party. Spencer and I were in dreamland. But they had such good news they figured it was time to wake us up!

Drum roll please.......The DNA test is back and Spencer is 100 percent donor cells!!!!!! This is the best news! Amazing! As good as it gets! The doctors are very very happy (so happy they woke us up). They are also happy that Spencer's skin rash is cleared up and there is absolutely no sign of graft vs host, although it is still very early. And the test was done at day 20, eight to ten days before they usually check it the first time. And thanks to his new appetite for pizza, he got his TPN reduced to 14 hours a day. And we dumped one of the diuretics. All good!

Have we mentioned that the Pediatric Bone Marrow Transplant team at Duke rocks?!! We love the doctors and our nurses - they are awesome! They have been on top of every little development and managed his care so well. Another plus is they are so wonderful about communicating with parents. Andria, our primary nurse has been fantastic. Spencer is madly in love with her and makes up reasons to call her back to the room. Rob, Spencer's best buddy has been so supportive and helpful too. He even donated platelets in Spencer's honor this week.

Thank you to everyone who donated blood in Cambria yesterday in honor of Spencer. Thank you so much to all of you who have followed our journey, and offered words of encouragement and hope in Spencer's guestbook. It means so much to all of us.
Love,
Kerri, Brian and Spencer Rocket

Wednesday, May 26, 2004 5:01 PM CDT

Please see info at top of page about the blood drive for Spencer tomorrow in Cambria, and on June 9 in Morro Bay.

Day 21

Spencer is ripping, but the intenseness of all this came crashing down on the whole unit last night and today as one of our cellmates didn't make it. The mood around here is a bit down to say the least. A big reminder that this is not a place you want to hang out in for too long. We are also very worried about our friend Robert back at Stanford. He relapsed back in December and has had a tough time since. He was inpatient with us in March, and Kerri and Robert's Mom Kathryn became good friends. Robert, who is 17, is not doing well and needs all the prayers he can get.

Spencer continues to pass milestone after milestone. We are way past the 3 to 14 day period where Spencer was expected to feel the worst. Day 20 marked the end of the window where VOD would normally be expected to be detected, a potentially fatal disease of the liver related to transplant. Also on day 20 the docs took Spencer off the continuous Cyclosporin drip. This is a big deal. Cyclosporin supresses the immune system, sort of making the white cells less able to fight things with the intent of preventing them from attacking the host, minimizing GVH (graft vs host disease). He now gets infusions twice daily.

Speaking of white cells, Spencer's white count is up to 3800, at the low end of normal. But "normal" is not really normal because of the steriods and cyclosporin. Also, Spencer's steroids started their weaning phase (10 percent per week). His TPN (IV nutrition) was reduced to 18 hours per day (he is just starting to eat as well in addition to powering cocoa about 5 times a day). He is also being weaned off the pain pump, and may be rid of it entirely this weekend. We've also dropped one steroid cream because his rash is so under control.

And the biggest news is that the doctors are now calling Spencer officially "engrafted"...past tense. It's always big when the doctors say it. Discharge is still on target for next week and we are actually on the discharge "list". We don't want to get out too early, though. It'll be nice to wean Spencer off as many meds as possible first. And get him eating a bit more. Besides, once were out we're just going to be hanging out in the clinc for 6 hours a day, 7 days a week. But, we want to get out of here too.

Best of all Spencer is getting some spunk back, at least verbally. He is a character. I wish I could share all the funny things he says. He's a funny guy, like Jay Leno. Oh, and if he knew how to dial the phone or send a text message he would have voted for Fantasia. Well, we are in North Carolina after all.

SOMETHING GOOD THAT HAPPENED TODAY:
Today Megan from Child Life came by to play with Spencer while Mommy and Daddy stepped out for a few minutes. Spencer finally did great without us, making us think he's coming out of his shell finally. Spencer and Megan made some magnetic photo frames for the refrigerator. We tried to convince him to make a frame for Dad, or some Grammas or Aunties, but he will only make things for his Mommy.

Thanks for checking in and hope everyone has a good time getting their blood sucked out of them tomorrow in Cambria.

Monday, May 24, 2004 10:53 PM CDT

Note: Please see top of page for info on the blood drive in Spencer's honor.

Day 19

We had a serious setback today, Spencer's doing great but Mommy almost needed an ambulance when she opened our wireless bill. We had to charge the defibulator to 300 after she saw $672.00 for last month. I thought those commercials were just a joke, but apparently they're not. Oh, the hidden costs of cancer. Mom's going to have to make some calls tomorrow to get this number down because $672 is just not an option.

As for less stressfull things, Spencer's transplant is still going just swimmingly. Dr. Prasad came back after the weekend off and asked Mom what Spencer's white count was. When she answered that it was 2.4 (without Daddy's white cells) he took a step back and said, "2.4?". Then he enthusiastically shook Mom's hand and said, "That's fantastic, just fantastic. Really remarkable." So I guess Spencer's doing pretty good.

And I was wrong again for the first time. The doc's will be doing a chimerism (DNA) test on tonights blood draw to check on who's cells are in there. The results probably wont be back until Friday. They don't usually do this test until day 30 or so, but Dr Prasad said they're doing it now, "because they can." Meaning Spencer's white count is high enough, so what the heck?

Spencer's been really really tired for the past several days, sleeping most of the day. He gets really fatigued just walking one lap up and down the hall...if we can convince him to do that. But, right now, just after midnight, Spencer is a bundle of energy. Maybe he's snapping out of it. He even ate a popsicle and some booty (you know, Pirate's Booty, the puffed cheese thingies). He's laughing and making jokes. He says "Daddy is a funny guy...like Jay Leno." What? Doesn't your 3 year old watch Jay Leno?

Spencer's best buddy Rob came by again and Mom and Dad left the hospital for a while. Spencer wasn't too thrilled by that. I guess it wasn't too fun for poor Rob, but he is a great sport. You might say Spencer is a little psychotic right now. He screams the whole time to Rob, telling him to get out of his room, but when we get back he gives Rob a giant hug. Steroids are so great.

SOMETHING GOOD THAT HAPPENED TODAY:
Well, even the Doctors muttered the "D" word today, so I guess it's safe for me to spell it out now. If things continue on the same track we'll be D*I*S*C*H*A*R*G*E*D probably next Monday, maybe Tuesday if the holiday thing is an issue at all. That'd be day 26 or 27. But one day at a time still.

Saturday, May 22, 2004 3:52 PM CDT

Day +17

We are happy to report that there's not much to report. Spencer continues to do well. His rash is completely under control, white count is up to 2300 and ANC of 1516. The doctor's expect his white count to top 3000 by tomorrow. They couldn't be happier.

Since getting Dad's granulocytes is continuing to give Spencer a slight allergic reaction, and because Spencer's white count is good they are going to discontinue the granulocytes. Dad is happy because his white cells let Spencer sail through the neutropenic (no white cells) stage, and Mom is mad because Dad's white cells were "polluting" Spencer due to the alergic reactions lately. All in good fun of course (I think). If for some reason Spencer's white count drops they'll start the granulocytes back up.

Spencer's been pretty good with the hemoglobin and blood chemistries, but he's needed about one platelet transfusion per day. Platelets are the clotting blood cells. This will probably continue for quite a while. Also, Spencer's blood pressure is still really high and he is now on continuous medicine for this. Apparently most of the kids on the unit end up on blood pressure medicine. He gets some pretty scary high readings sometimes.

Otherwise, Spencer is very very tired most of the day. Not too much hall shopping going on anymore. Lots of snuggling. The new cells are doing their work. His skin seems to be super sensitive right now too. When we put the steroid creams on for his rash he really complains. And he goes ballistic when he gets a sponge bath or line dressing change.

SOMETHING GOOD THAT HAPPENED TODAY:
The "D" word has actually been muttered lately by a few folks around here. In anticipation they have started weaning Spencer off his pain medicine pump. But still lots of preparation to do before actual "D", like figuring out how we're going to handle the humidity around here once we're out. Right now it's 94 degrees outside and you need a snorkel to breath...and it's only May. Yikes. Thanks for checking in, from some wimpy Californians.

Thursday, May 20, 2004 4:04 PM CDT

Day 15

Spencer continues to absolutely shred through this. We definitely wear out our knuckles knocking on wood and crossing our fingers, plus we've run out of pennies because we've thrown them all in the fountain, but Spencer is ripping. His white count is 1.6 and even has an ANC of 800 already. Very good results.

The last couple days he's had some strange reaction while getting Dad's granulocytes - high heart rate, swollen throat, throwing up, and diarhea. It was particularly bad yesterday, but quite a bit milder today, maybe because we were looking for it. He gets a dose of hydrocortisone and that takes care of it. It goes as fast as it comes. But it's a bit of a change from how he has handled blood products in the past. Spencer's overall heart rate seems to be off and on climbing back into the normal range, so maybe the bradycardia was caused by the megasteroids. He still is flirting with some pretty high blood pressure readings though, at times.

And I was wrong again (first time), not only are they not doing DNA analysis of Spencer's blood yet, but they don't need to do that at all. Since Spencer's donor was a girl, a simple blood test will show if the blood cells are male or female, which in turn will show who's cells they are. No need for the fancy schmancy stuff. They still won't do this test for a week or two.

Thanks again to everybody who's following along with Spencer's experiences. Please sign his guestbook. Keep in mind the guestbook will be a fantastic keepsake for him when he's all grown up. Imagine fifty years from now having Spencer read your guest post with a tear in his eye, amazed from the support he had when he was a little guy, support from friends, family, and people we've never even met.

SOMETHING GOOD THAT HAPPENED TODAY.
Lisa, the physical therapist (he still has issues with this), came by yesterday with one of those Little Tykes plastic shopping carts and got Spencer all excited about going shopping out in the hall. This was the greatest thing for him. He was so motivated and happy. He asked all the nurses if he could buy some medical supplies from them. He came back with saline, syringes, alcohol wipes, masks, IV lines, you name it. Today we did the same thing and he was practically running down the hall. I asked, "where is this coming from?" (his energy). And Spencer answered, "From my new blood." Go figure.

Tuesday, May 18, 2004 3:17 PM CDT

Day 13

After nearly two days without Dad's granulocytes (white cells), Spencer's white count went....UP - to 0.8. This is a nice number and it's is very possible that Spencer is now producing his own white cells. I was wrong (first time) about them doing DNA analysis at this point. It is way too early and they won't check anything like that until at least around day 28 to 30. But this is great. Spencer is doing great. Of course there is the possibility of his white count going back down a bit, but it's nothing to worry about. It's still very early but we are happy (relative to our situation of course. I could think of ways to be happier).

Spencer seems to have kicked the fluid retension issue, but is still hanging on to the low heart rate. We feel it is trending back upwards, particularly this afternoon. But they are thorough here almost to a fault...and that is one reason why we came here in the first place. We were forewarned that the Doctors would be like this, jumping on every abnormality, doing every test, checking every possibility. And consequently making us worry about everything no matter how low the probability. They have seen it all here.

So, Spencer is supposed to get a CT scan of his brain to check for any infection or bleeding that could cause his high blood pressure/low heart rate. It's very rare, but they check it all. The doctors here rock. Otherwise we're still just holding our breath through these critical days. It seems like transplant was only a couple days ago and it's already nearly two weeks. Time is flying by. Just the intenseness of the whole thing is making it go by quickly. But I still wish we had a time-fast-forwarding machine.

SOMETHING GOOD THAT HAPPENED TODAY:
Rob, Spencer's Best Buddy came by yesterday again. Of course Spencer had just fallen asleep, but Mom and Dad went for a walk, ate ice cream, and even talked to each other without interruption for probably an hour and a half. It was nice. First time that's happened since...well, when was Spencer diagnosed? No, wait...how old is Spencer?

Monday, May 17, 2004 0:09 AM CDT

Day +11

Things are proceeding according to plan. However, hurricane Spencer hit North Carolina as forecast yesterday. Day 10 was definitely interesting. The mega-dose of steriods kicked in and Spencer was basically out of his mind from mid-morning until midnight. At times he was just laying there screaming at the top of his lungs for no reason. He wanted every type of food but wouldn't eat anything. He told all the nurses that they were stupid and they should "LEAVE NOW". Daddy and Mommy were on the receiving end quite often as well. Spencer had patience of about 0.1 seconds all day long, non-stop. Fortunately there were very few tantrums that appeared to be headed in the direction of purposeful personal injury, as we had initially feared. Everything could be easily laughed off as totally absurd as long as you stepped outside the room. The nurses were having some chuckles at our expense. Apparently only about 25% of the kids get this steroid treatment.
His last dose was at 1 AM Sunday morning and we seemed to dodge the bullet after that. He slept until nearly 3 PM (thank god) and was much more subdued today, albeit still a bit cookoo.

A couple issues have popped up possibly related to the steroids and/or engraftment. His weight is rising, meaning he is retaining fluids despite being on diaretics. According to the Doc's, during engraftment the capillaries will leak fluid into the surrounding tissue instead of routing it to the kidneys. This is normal but can get serious so they are watching things very closely, cutting back on the IV fluids, limiting his oral fluid intake, and have dropped one antibiotic that can be hard on the kidneys. Second, Spencer's heart rate has dropped a bit. The mega-steroids may have increased his blood pressure, and the heart may be compensating by beating slower. This also is not unexpected but must be monitored closely. Spencer had an EKG (which was fine), and another antibiotic that was started at the same time the bradycardia appeared was dropped in case there is any correlation. Otherwise things are going well.

Next up is a bit of anticipation towards Spencer's lab results on Tuesday morning. He got Dad's white cells Sunday morning, and now will not get them again until Tuesday afternoon. Dad's white cells are causing Spencer's lab results to show a white blood count of between 0.3 and 0.7, but after nearly two days off from this the Doc's will be eager to see if there will still be a white count Tuesday morning. If so, they could be Spencer-made cells. And a DNA analysis will be done to determine who's cells they are (Spencer's, Dad's, or the donor's). Obviously we hope they are from the donor.

SOMETHING GOOD THAT HAPPENED TODAY:
Okay, it's with a bit of reluctance that I (Dad) write this: Mommy headed back to the apartment in the afternoon for only the second time in the past 17 days (she just can't pull herself away from Spencer). For most of the 5 hours she was gone Spencer was going on and on about how, "I miss my beautiful Mommy. My beautiful Mommy. Mommy is gentle. I love her. I miss her. You're not gentle. Can you get Mommy? I miss her." It's enough to make Dad ill. I guess there is an up-side to the steroids, at least for Mommy (notice Dad is blaming the steroids for this injustice).

Saturday, May 15, 2004 0:08 AM CDT

Day 9

Very good news: Spencer feels like crap, he's got persistent fever, and is covered head to toe with rash. He's itching all over, his eyes and nose are burning, and he's particularly uncomfortable in the rear. We are so happy.

This is no joke...funny (not funny haha) but true. The doctor said that all these symptoms are officially from "engraftment syndrome", not actual engraftment, but all the signs that they expect to show up in advance. These are the other cells that came with the transplant doing their stuff, like T-cells etc. Obviously the stem cells themselves are in the bone marrow producing areas and not out on the skin causing rash, but these other cells are, and it's definite signs that the donor cells are stimulated, causing some graft vs host (GVH). This is very early and the doctors are delighted.

Bad news is that to control the rash (you don't want it getting too bad) they are giving Spencer a mega-dose of steroids over the next 48 hours. This is 700mg per day (350 mg twice daily) for two days. To give you some perspective what we're in for, Spencer's regular chemo treatment doses totaled 27 mg per day and made him radically moody and crave strange foods. He's now going to get 50 times that dose over two days, which should knock out both the fever and rash. I guess I will have to break out the video camera to document the Dr. Jekyl/Mr. Hyde transformation, otherwise no one would believe our stories. We're not looking forward to it. He's already had his first dose and he got so whacked out they had to give some benadryl to calm him down. Maybe we can back off the dose since we've already knocked the rash back a lot with creams and the fever has stabilized between 99.5 and 101.5. We're not seeing the super high fevers any more. But my guess is the doctors won't go for it. Maybe if they had to stay with the patient for a few days afterwards they'd change their mind.

So, if Spencer keeps it up we may see an increasing white blood cell count within the next week. That would mean actual engraftment, which would have us dancing in the halls. Of course it could be longer than that but the doctors say Spencer seems like an "early responder", plus he had a very high cell dose. What's cell dose? Glad you asked. When they analyze the cord blood when it is donated they look to see what the quantity of packed stem cells is. I don't know if it's a percentage or a total number or what, but it is also in relation to the total quantity of transplantable material available in the cord, which varies. When they match a cord to a donor, they combine this info with the patient's weight and come up with a number indicating the "cell dose" for the particular transplant patient. New research indicates that cell dose is equally or more important than the HLA type match, for example, a 5/6 match with low cell dose may not be as desireable as a 4/6 with high cell dose. A primary effect of cell dose is early engraftment.

Duke will use a cord as long as the cell dose is over 3, and the number can go up to 14 or 15 at the highest, and that would only be for very small transplant patients like infants. Numbers around 8 or 9 would be considered very high. Spencer had two good cords matched for him, a 5/6 with a 5.2 cell dose, and a 4/6 with 9.9 cell dose. We were pretty excited about the 5/6 because theory would have it there may be less GVH, but for unknown reasons, during our work-up to transplant last month this cord became unavailable for use (scary). It was from the UCLA cord blood bank and Dr. K tried hard to get them to release it, but they would not. And they would not give a reason why. So, we went with the 4/6 with the very high cell dose (which was in the Duke bank). Sure enough, looks like we've got some early engraftment. It's still one day at a time so we don't want to get too far ahead of ourselves, but we're going to try to add to the research - cell dose, cell dose, cell dose. Sorry for the long post.

SOMETHING GOOD THAT HAPPENED TODAY:
Two words - "engraftment syndrome"

Thursday, May 13, 2004 4:11 PM CDT

Day 8

Well Spencer's honeymoon of feeling better is definitely over. A fever started the evening of day 6, hit 104.5 that night, was very high all day yesterday, peaked at a 105 last night, and seems to have finally broken this afternoon. He's down to 99.6 now and feeling better. Obviously he was completely wiped out for the past couple days.

All his blood cultures are negative and all his vital signs are good, lungs are clear,etc. so there's no obvious infection causing the fever. Although it is very very early, we are holding on to the belief that it is a fever related to pre-engraftment of the stem cells. He is also showing very subtle signs of rash, which would be expected to coincide with this. This would all be good news but any time your kid hits 105 degrees it's a bit of a freakout.

Once his fever broke Spencer perked up and wanted to go for a walk in the hall (we are ecouraged to walk in the halls because the exercise benefits for his lungs etc. outweight the risk of infection by being out in the hall. Besides the entire unit is hepa filtered and under double-door isolation, not just the rooms.) but just before we headed out the door Spencer decided something was bugging him up his nose. The result was a 45 minute gusher of a bloody nose. We had to spray clotting medicine up his nose and get a platelet transfusion to get it to stop. The dry air in the filtered rooms causes the sinuses to dry out and crack. The occasional finger up there doesn't help matters.

Overall things are going well but the days of reporting about how happy and playful Spencer is are probably over for a little while. And his fevers are likely to continue for several days.

SOMETHING GOOD THAT HAPPENED TODAY:
As these days get so immersing with Spencer in the hospital it gets a bit difficult to thing of something. I'm going to have to cheat and use the fever breaking thing, and the possibility it has to do with engraftment. But I already mentioned that, which is why I'm cheating....Okay wait, I've got one. Spencer went for his walk in the hall and he was spanking his Mommy in the behind all the way. That was a good thing.

Wednesday, May 12, 2004 0:35 AM CDT

Day 6

Day 5 was just amazing. Spencer was the best boy I think he's ever been. He played all day, went for a couple walks up and down the unit, charmed the nurses to no end..."hey nursey! We're beeping!", and had endless happy energy. He wore us out. Even the doctors were blown away. They say some patients can get a sort of honeymoon from feeling bad between transplant and day 3, but Spencer was charging on day 5. All evening he was dancing and singing to his Little People Discovery Airport computer game. And there's a perk to being cooped up like this - Spencer may not be getting the physical and social activities that normal 3 year olds get, but he rips on the computer now.

Day 6 Spencer slowly ran out of energy. He was fairly out of sorts most of the day. And he finally spiked a fever in the evening, sparking some blood cultures and a new antibiotic. He's also complaining of mouth pain now. So these are all perfectly acceptable symptoms that we can live with, but we may be entering the feel lousy phase. And who knows, maybe those new stem cells are causing the fever, poking around looking for a comfy place to engraft.

Speaking of the stem cells, here's some info that you may find interesting. I noticed little Madie from Georgia signed Spencer's website today and she said, "Steady as SHE goes." Well, that's not far off. In fact, Spencers cord is from a female, so Spencer's blood will test female for the rest of his life. Also, the cord blood type is B positive , so Spencer's blood type will change from O positive to B positive during this process. And, shazaam, the ethnicity of both parents is listed as Asian Indian. From all we know about bone marrow transplant and HLA typing for BMT, this is a real freakout. But there is apparently a lot of ethnic mixing with cord blood and it's not a problem with CBT. This is the real beauty about CBT, there is a much much greater chance for a match among children with mixed ethnicity, whereas with bone marrow it can be exceedingly unlikely to get a match. That is why it is unfortunate that the total number of cord's banked right now is so low in comparison to the bone marrow registry. Just a little cord trivia for you. It's pretty amazing really, like Star Trek medicine, only a little rougher.

SOMETHING GOOD THAT HAPPENED TODAY:
Spencer's best buddy Rob came by today. (Everybody on the unit has the opportunity to have a best buddy, who is a volunteer who comes by a day or two a week to interact with the patient, and perhaps give the parents a break.) Rob is great. He and Spencer had some good conversations and watched a movie while Mom was out doing errands and Dad walked to Kinkos for some business stuff. So both of us were out and about at the same time while Spencer got to play with someone besides Mom and Dad. Kind of an oddity.

Monday, May 10, 2004 1:17 AM CDT

Day +4

Okay, so technically it's day +5 if you look at the date (it's late), but I'm writing about the just completed day - day +4. And Spencer had another great day. One collosal breakdown mid-day, but fantastic other than that. Super sweet to Mommy on Mommy's day. Fortunately Mom wasn't in the unit during the breakdown. Not much to report other than that.

To take up some space, and some more of your time, here's the junk we're pumping into Spencer, and why (and keep in mind this is for a kid who is doing good):

Saline - continuous IV fluids for hydration and blood chemistry
TPN - continuous IV to provide nutrition (Spencer's not eating)
Lipids - continuous IV for nutrition - fats etc.
Cyclosporin - IV med to control GVH given daily
Ceftazanine - IV antibiotic to cover any potential bacterial infection, twice daily
Tylenol - Oral med for headache or premed for any blood transfusions
Benadryl - IV premed for any blood transfusions
Granulocytes - IV Dad's white cells given 6 days per week
Hemoglobin - IV Red blood cells as needed
Platelets - IV Platelets as needed
Voraconozole - IV med for potential fungal infection - twice daily
Acyclovir - IV anit-viral infection med, daily
Lasix - IV diaretic to promote urine production, daily
Diuril - IV diaretic to promote urine production, daily
Prednisone - IV steroid - twice daily
GCSF - IV white cell growth promoting med, daily
Nifedipine - oral Blood pressure med as needed

Yummy. Maybe Spencer should have a few more central lines put in to accomodate all that stuff. Somehow the nurses keep all that stuff straight. And have I mentioned how great the nurses are? Well they are.

Sunday, May 9, 2004 0:00 AM CDT

Day +3

Spencer continues to do very well, by transplant standards. He has some very visible mouth sores, mostly on his tongue, but he says they aren't bothering him. And his behavior agrees with that. He's still chatty and fun. He's on this pattern of feeling great the first part of the day, then has 2-3 hours of feeling lousy and being moody for various reasons, then snaps back to being happy for the evening session. He's been on that kick for several days. The blood pressure issue is still nagging once in a while, but he's getting a lot of infusions that will cause high pressure. And this evening his temperature was up slightly.

He seems a bit tortured by the food thing. He is on pretty good doses of prednisone now so he feels hungry. But put any type of food he requests in front of him and he rejects it straight away. Then he figures that, "oh well, I just want something else." And starts demanding whatever that may be. We don't take him seriously anymore, but he's bummed sometimes. Our friend Jared two doors down, who we've been shadowing move for move through the transplant process, is doing the exact same thing. After three weeks of simultaneous work-up, Spencer and Jared had their transplants within five minutes of each other.

Spencer promises to be nice to Mommy all day tomorrow for Mommy's day. It's not the ideal place to spend a Mother's Day with the family, but we'll make due. Spencer loves his Mommy, and that's all Mommy needs to get through this.

SOMETHING GOOD THAT HAPPENED TODAY:
Jared's Dad, Don, cooked a gigantic meal for all the parents and nurses on the unit today. There was lasagna, eggplant parmesean, chicken marsala, salad, dessert, you name it. And lots of it. He cooked it all at their apartment, which is just like ours, and brought it over to the parent's lounge. I don't know how he did it. We can barely cook for ourselves.

Thursday, May 6, 2004 10:37 PM CDT

Day 1

Spencer had another great day. He really was going off with the nurses today. They're seeing the real Spencer. It will be sad when he starts feeling bad and goes back into his shell. He played Chutes & Ladders with nurse Trish today. Afterwards he asked her if she wanted to get under the covers with him. He IS wise beyond his years. Now when he wants to see the nurses he just pushes the nurse call button. He's called nurse Andria in to play twice tonight already. He also steals stuff from them and then pushes the call button to tell them they left something in the room. Tricky, but it's getting a little embarrassing.

Dad had his first pherisis session this morning and Spencer got the granulocites this afternoon. Everything went smoothly. Dad even gets to sit by himself for a couple hours, attempting (unsuccessfully) to get some work done. Some perks with this treatment is that Dad gets to eat a lot of food rich in calcium and iron - ice cream, burgers, milk shakes, you name it. So much for trying to keep in shape...yeah...right, that was going to happen. A not so great perk is the night before each pherisis Dad gets GCSF shots, one in each arm. This is to stimulate white cell growth. Fortunately Spencer is more that willing to hold his hand to help him be brave.

Thanks so much to everybody for checking in yesterday and today since Spencer's big day. It really helps us all get through this.

SOMETHING GOOD THAT HAPPENED TODAY:
Spencer: "DADDY! Daddy Daddy Daddy!"
Daddy: "What Spencer?"
Spencer: "Let me see your tummy."
Daddy lifts his shirt.
Spencer: "It's big...'cause you eat too much ice cream."
Daddy: "But I do it for you."
(I don't make this stuff up)

Wednesday, May 5, 2004 9:21 AM CDT

Day 0 - Transplant Day

10:30 AM
Spencer is feeling very good and we're just playing on the computer waiting for transplant. It is scheduled for noon. Not much else to report at this point.

12:15
Spencer's cord blood is here now. We're hooking him up to the monitor and getting ready to go. We took a bunch of pictures first of course.

12:26 pm
Transplant started at 12:20. We're just hangin' out, listening to Spencer Rocket's song. And Dad's being a geek posting on the internet. Spencer's a little groggy from the pre-meds but he's trying to watch Between the Lions.

1:00 pm
All done. Spencer's asleep. He's got some high blood pressure, which isn't unusual but now we have to start the chant: GROW CELLS GROW

4:45 pm
Spencer had a little nap earlier but he's going full-throttle now. He's chatting up the whole floor, playing with the nurses, playing trains, cars, squirting water on the nurses. Where is he getting all this energy? And now he's demanding I go get him cheese enchiladas. Sound familiar?

9:25 pm
This kid is going great guns - non-stop playing and blabbing, but we'll take it any day. Just when we thought he couldn't get any cuter or sweeter. His hardest days will be the next two weeks. We can only hope he continues to feel half this good. Thanks to everyone for signing the guestbood today.

Tuesday, May 4, 2004 11:49 PM CDT

Day -1

Tomorrow's the big day. Spencer had his last ATG treatment today and did very well again, although he had two doses of medicine for high blood pressure. Our biggest issue right now is the pooping issue, which has dogged us through this whole process, and more. It is a bit bigger concern right now, but we're trying to stay on it. In fact, the high blood pressure could be related to this as well.

And Dad's line surgery went great. When Dad got back to the room the first thing Spencer and he did was to pose together for line pictures. They're blood brothers now. Dad also knows a tiny bit about how Spencer felt after these surgeries. It's sore. Let's just say you're not about to go out and do a bunch of sit-ups anytime soon. And Spencer has had three surgeries for this. The second one was a two hour nightmare, and the third one was for two hickmans at a time, one on each side. Zow!

So transplant is scheduled for around 11 AM tomorrow. I'll try to post a few updates throughout the day, with some pictures if I can manage it. It'll be like a live webcast, but not quite. Well, maybe an hour or two delayed, depending on Spencer's disposition.

SOMETHING GOOD THAT HAPPENED TODAY:
Today's good thing was really a bunch of little good things all put together. Dad's surgery went great. Spencer got his poop out (but not until 9pm), Spencer handled the ATG great. The Thomas Breakdown Train came in at the toystore up the street (which is a pretty big good thing if you ask Spencer). And Spencer made it through another day without feeling too bad. Dr K says to grab ahold of that because it's one less day of feeling crummy while in the hospital.

Monday, May 3, 2004 11:18 PM CDT

Day -2

The countdown is getting pretty low. Pretty exciting, I guess. Spencer had his second treatment of ATG today and did great. No fever at all. He didn't feel bad like yesterday either. He even sent me out to fetch some fish & chips...errr...I mean fish and french fries, because Spencer wants french fries, not chips. Why would I call it chips anyway, when they're french fries? That's silly, as Spencer says. It took an hour, plus six bucks to get out of the parking garage, but Spencer took 1 1/2 bites and then rejected it, so it was all worth it. NOT! How many times is this going to happen over the next several months? Pretty minor though.

Tomorrow is the day before transplant and is theoretically a "day of rest". But tomorrow is also Spencer's last day of ATG. This is not only a 9-10 hour infusion, but he has to be hooked up to a vitals monitor the whole time. Spencer has also started on cyclosporin, another immunosurpressant drug that targets lymphocites without interfering with the new stem cells. This, like ATG, prevents rejection of the donor's cells. So, a day of rest? I think not.

Also tomorrow, Dad has surgery to place a central line for pheresis. By all accounts, Spencer will owe Dad something for all the white cells he's donating. It should dramatically reduce Spencer's mucositis, and fight potential bacterial and fungal infections. First pheresis treatment is on Thursday.

Blood Drive in Cambria:

I don't know much about this, but a blood drive is being organized in Cambria for May 27. I will get more specific info and post it a bit later, but I'd like to elaborate about participating in this. Duke gets it's blood from the Red Cross so it is not possible to donate blood directly to Spencer. However, you can donate in Spencer's honor (so your blood type doesn't matter). This is an incredible gesture not only for Spencer, but for everyone. And for anyone who feels the desire to help Spencer, but doesn't know how...well here it is. Our nation's blood supply is at critically low levels. When Spencer's marrow is killed off in preparation for transplant his body will be unable to produce blood cells for a long period of time. To get through this a transplant patient will need an average 100 transfusions over a 3 month period (about 80 hemoglobin and 20 platelet transfusions). This is a lot. And it can put a strain on the supply. So please consider participating in this, or any, blood drive. More later.

SOMETHING GOOD THAT HAPPENED TODAY:
At 10AM this morning Spencer had his last dose of melphalan. God willing, that was the last dose of chemotherapy of any kind that Spencer will get...EVER.

Sunday, May 2, 2004 10:50 PM CDT

Day -3

Imagine that....there was a tornado warning today...a real one. It was a few miles south of Raleigh but still...funny. Not funny-haha, but funny...hmmmm. Otherwise there was some wild weather outside the window today. Spencer and I layed there and watched it while Mommy was stuck at the apartment, not about to head back to the hospital with all that rain and lightning. Spencer said the trees were very happy.

After our first dose of melphalan Spencer's white count went...up. Funny...hmmm. The guy's tough. But we got our second of three doses today. And Spencer started on ATG, which is nasty. ATG kills all his T-cells, the attacker cells, so that the transplanted cells will find no resistance when they get in there. 80% of kids have trouble with this drug - very high fevers (up to 106), rashes, hives, high blood pressure, diffuculty breathing, heart irregularities. Yikes! But all this pretty much happens during the actual infusion and goes away soon after. Of course the infusion is over 9 hours (10 in Spencer's case today). He did great. His fever spiked to 104.2 and he felt lousy which goes without saying, but that's it. No other problems. He'll get two more days of this, but interestingly, the side effects are normally less with each dose so today should have been the worst of it. Let's hope so.

But they say the start of the ATG generally marks the true beginning of when a patient starts to feel lousy. And it won't stop until near when you're ready to leave the hospital. So we're into it now. Things are moving fast.

SOMETHING GOOD THAT HAPPENED TODAY:
Kerri got to have a nice talk with Jill Schwab and Pat Bingham, two moms from the ALL listserve who's son's both had T-cell relapse and UCB transplants at Duke. They're in town for 18 month checkups and the Rainbow of Heroes walk. They shared all their experiences, tips, and secrets for handling transplant with us. Both Alex and Isaiah made it through transplant really well, so their info is invaluable. We'll be implementing some of their suggestions to beef up security around and in room 5207. Thanks.

Friday, April 30, 2004 11:45 PM CDT

Day -5

Phew! We knew today was going to be a long day, and it was. But things went well. It was our last day of radiation...and it is good to finally put that behind us. What's done is done and Spencer sailed through it like a champ. We were originally supposed to get admitted to 5200 inbetween radiation appointments, but there wasn't much fun in that so we didn't come in until after the afternoon appointment. We got an extra several hours to play with Spencer at the apartment. Even got a couple new visitors to the bird feeder - a hairy woodpecker and a bluebird. Spencer was particularly excited about the bluebird. Maybe because he spotted it.

But time kept marching on and our afternoon radiation appointment came and went. We walked back from Duke South to Duke North very very slowly. Now I know what it must be like to be heading off to prison for a long time. We are now incarcerated in 5200. We've met a few other cellmates already and they all seem nice. Our primary nurse, Andria, is super cool. We are very happy about that. She's going to try to give Spencer's favorite nurses back at Stanford a run for their money.

So, here we are. This is what we came for, anticipating it with both impatience and dread. Knowing it's our ticket back to a healthy Spencer Rocket. For now he's feeling good, already dragging Mommy around the hall checking things out. But the radiation has dropped his hemoglobin to where he needed a tranfusion this afternoon. The first of many he'll need. Dad is scheduled to get his line in on Tuesday and Spencer will start getting white cells the day after transplant. Saturday starts three days of chemo to wipe out the rest of his white cells and marrow. The docs say this chemo won't make him feel too bad, like some of the other stuff he's had. I don't have it right in front of me but I think it's malphlan or som'n. Thanks to everybody for sending all the positive energy over the past couple months, helping to get Spencer here. Keep 'em comin' because this is it.

SOMETHING GOOD THAT HAPPENED TODAY:
I don't know if this was a "good" thing at the time, but it's pretty funny now, and helped take our minds off some stuff. We walked from the clinic back to Duke South (where radiation is) to get our car so we could head back to the apartment between appointments. We were standing outside waiting for the valet to bring the minivan when this guy comes rushing out of the building and says, "The National Weather Service has issued a tornado warning. Get away from the windows and get in the building. Right now!" Well, my whole life and career has essentially revolved around the weather. I had checked the weather on the computer in the morning. Let me tell you there wasn't a cloud in the sky. Things just didn't compute.

So I say, "What?" looking up at the sky. "Here comes the valet with the minivan. We'll just go." While he's dragging Kerri and Spencer into the building he belts out, "You won't get past the police baracades. They have the streets blocked off." Still looking at the sky in bewilderment, I say, "But..." Then he starts to really go off, "GET IN HERE...NOW!!!!!! THERE'S A TORNADO. GET AWAY FROM THE WINDOWS." So we follow him back into the strangely empty building. Just then the PA system goes "This is only a drill...The NWS has issued a..." Well, we suddenly got the picture, but this guy was playing the part. Hollywood should get ahold of him. He wisks us into the bowels of the first floor where a lady opens a door to a windowless room and says to go inside. That's where Kerri got into the action.

The tiny room was standing room only, packed like a sardine can. Had to be 50 people in a 12x12 room. Kerri took three steps backwards and said, "NO WAY. We're not going in there with all those people. We're getting admitted for transplant TODAY. You've got to be kidding." So after a tense few more moments they agreed to put us in our own room. So there we sat, completely alone, in our own room for some ten minutes waiting for the all clear. It was bazaar. Now it's funny. You could beat us over the head with a hammer and you couldn't snap us out of our transplant mindset, but this took some of the edge off.

Wednesday, April 28, 2004 11:18 PM CDT

Spencer is over half way through TBI now, only 2 days and 4 treatments left, and Spencer is doing fantastic. He’s happy and bubbly, singing and babbling all day long. He even pushes us to get going to “get his picture taken” in the morning. And disturbingly, he’s more than willing to put the mask over his face and breath the sleepy gas. It’s enough to make a parent very confused. Spencer’s white count is dropping fast and his appetite is going south, but he still at least nibbles all day and is drinking great.

Thought I’d take this opportunity to describe what exactly a cord blood transplant is, for those of you who might want to know more. For those who do know more, then nevermind. So if you’re interested, a long blurb follows after my SGTHT section.

SOMETHING GOOD THAT HAPPENED TODAY:
Tuesday - We had to stay at the hospital all day through both radiation appointments (about 8 to 4), most of it just waiting. And Spencer was such a good kid, sweet, happy, funny, laughing, for 95% of it. This is so tough on him and he is just amazing, telling us how much he loves us, pointing out all the cool things he sees. He's just so positive. This was just oozing on Tuesday.

Wednesday - the radiation guys pushed us back one hour, for today only (they told us yesterday), so we got an extra hour of sleep. Sweet.

LONG BLURB: Disclaimer: I'm not a doctor so don't take my info and try one at home.
UCBT:
The procedure for an umbilical cord blood transplant (UCBT) is identical to a traditional bone marrow transplant, as is the intent. This type of transplant (taking something from one person and implanting it into another) is essentially an extreme form of immunotherapy. Immunotherapy is touted as being the future of cancer treatment, where you jump-start your immune system to attack the cancer. So far new immunotherapy treatment has been disappointingly slow in coming to fruition. Gene ID and development of cancer-specific drugs are more likely the future. But to do real attainable immunotherapy today means transplant; replacing your immune system with someone else’s.

Cord Blood: When a child is born you now have the opportunity to save the cord blood, for a fee. Within 10 minutes of birth the blood within the cord and placentia is removed and sent for processing. The stem cells are separated out, analized, and mixed with a preservative (DMSO) that helps keep the cells alive while frozen. This mixture ends up in a clear bag about the size of a saltine cracker. It is then stored in a freezer cooled with liquid nitrogen. The freezers as Duke are cylinders about 5 feet across and 4 feet high and each contain 3000 cords. There are 9000 cords in a space no bigger than a small bedroom. Each cord is stored at a specific address within the freezer and can be retrieved using a computer and robotic arm.

The cords are HLA typed and that is used to match the HLA blood typing of a patient. And here is a huge difference between bone marrow and cord blood: A UCBT can be done with only a 3 out of 6 match or above. In a standard BMT, anything less than a 6 out of 6 molecular match is very undesirable. 2/3 of the UCBTs at Duke are with 4/6 cords. So it can be easier to get a match. Another benefit to cord blood is that there is much less risk of severe GVHD (Graft vs. Host Disease); when the new immune system starts attacking things it shouldn’t, like organs and stuff. Also, the stem cells are very young and clean, unlike using an older person’s marrow. A big negative to cord blood is the quantity of material available – very little. This limits UCBTs to patients about 100 lbs or less (kids). Another factor as important as the typing is the cell dose (quantity of cells present). Also, engraftment time (when the new marrow starts to produce new cells) is longer. This exposes the patient to higher risk of infection. Average time to engraftment for bone marrow is 15 to 20 days, but typically 7 days longer for cord blood. This means longer hospitalization.

Leading up to transplant the patient’s old marrow is killed off completely using chemotherapy and/or radiation. Oh, and the bone marrow (yellowy spongy stuff inside bones) is where all new blood cells are produced. The transplant itself is very anticlimactic. The cord blood is infused by IV into the bloodstream over about 15 to 30 minutes, and you’re done. The stem cells find their way to the bone marrow producing regions in a matter of a few minutes. Then you wait for the stem cells to engraft and start producing new cells. First come the white cells, then the red cells, and last the platelets. This whole process can take many months. This is why bone marrow patients have to be isolated from crowded or indoor areas for long periods of time following transplant. The entire immune system can be abnormal for quite some time, not unlike HIV patients. One large danger during transplant is “failure to engraft”. This can lead to a second transplant, or more likely, that the patient’s own marrow returns. This is very unlikely in patients who have already received prolonged chemotherapy (like Spencer), because the original marrow is weakend and unlikely to come back faster than the donor’s.

About the first 30 days are the most critical, up until and a bit after engraftment when there is zero immunity. Many many things are watched and many many different drugs or antibiotics could potentially be used during this time to control or prevent complications. The first 100 days post transplant are watched very very carefully as well. Drugs are taken to control the amount of GVHD that is present (some GVHD is good, but too much is bad. Some GVHD indicates that the new immune system is working and fighting alien cells. This may also suggest the presence of GVL – graft vs. leukemia, which is what you want in the first place – the new immune system to attack leukemia cells). Many complications can continue well past 100 days, but if there is no severe GVHD then most stuff will eventually “burn itself out”. Each patient responds differently so it is impossible to predict when medications can be stopped or isolation reduced. Some people sail through it and some have a very tough time. Patients who do best have 6/6 matched sibling cords, somewhat of a rarity.

The first successful UCBT was done in 1993 and of January 2003, about 3500 have been done worldwide – 3000 with unrelated cords and 500 with matched sibling cords. The total is easily over 4000 now. Duke does upwards of 100 per year now. Of the 3500 patients, roughly 50% are long-term survivors. Of course techniques have improved over the years and thus so have the success rates. Also, transplants are used for many different diseases, each with differing issues and outcomes so statistics like these are of limited use.

And now you know about as much as I do.

Monday, April 26, 2004 4:12 PM CDT

DAY -9

Today is the first day with a number. This means the count is on, countdown for now. We have now crossed the line. Right now we are counting down the days to transplant, then the numbers obviously increase post transplant. Transplant is day 0. We have TBI through Friday, when we will also be admitted to the the bone marrow unit. Saturday, Sunday, and Monday will be chemo days to finish off Spencer's marrow. Tuesday is a day of rest. And Wednesday (Cinco de Mayo) is Transplant - or as some people call it, his re-birthday.

Spencer is doing well for now, but we are fully aware of what we are starting to do to him, and what the risks are. We thought we were being careful before about keeping Spencer safe from colds and viruses etc., but now we are going to a whole new level - total lockdown. I think we are going to require guestbook posts to be scrubbed with anti-bacterial soap first :-)

As we destroy Spencer's immune system and marrow with the TBI he may become tired as we go through the week, and he may lose his appetite. The important thing will be to keep him hydrated before we're admitted. Then we get chemo and a couple other drugs, and all the potential stuff that brings. That's pretty much the source of all the emotional anxiety we have going into this - we know all the "possible" side-effects and complications with this, but you never know how each person will react. You go in pretty much blind, hoping for the best, and then hope to react properly to whatever situation arises. When I used to build houses with Bob, Clay, and Gerard, we'd usually be so deviated from the actual architectural plan that we just had to react to whatever problems came up. We called it "reactionary framing". We ended up with some pretty cool houses. Call this "reactionary medicine". But hopefully a litte more refined. We've been assured of one thing, though - that everybody hits bumps in the road. We'll just keep the tires at the right pressure and good clearance as we drive down the road.

SOMETHING GOOD THAT HAPPENED TODAY

The weekend - Nothing more than it was a beautiful weekend. Each day we took a nice hike along different portions of the Enos River. It is a very beautiful river. Everything is in bloom, butterflies are everywhere, toads, lizards, turtles, water scooters. You name it. Spencer loves them all.

Monday - It's been sunny and beautiful for two weeks, but today, the day of no return, a warm gentle rain was falling. Spencer loves to say how much the trees and flowers like the rain because it helps them grow big and strong - the source of life. This transplant is our source of life.

Friday, April 23, 2004 10:30 PM CDT

Spencer has now had 4 out of 5 cranial-spinal radiation treatments. It is going very well. We're usually in and out of there in a half hour or so. Unfortunately that's not the end of it. Monday afternoon he gets his first dose of total body irradiation (TBI). He will get 9 treatments - one Monday then two treatments per day (8:30AM and 2:30PM) through friday. Between treatments on Friday is when we are scheduled to be admitted to the bone marrow transplant unit (5200 as they call it here). With that first dose on Monday we will have crossed the point of no return. After that there is no turning back and we must proceed with transplant. To say that this is a scary thought is a colossal understatement.

A dramatic moment today (Friday) was actually signing the transplant consent papers with Dr. K. The papers have all the medicines, side-effects, complications, etc. on them. They are yucky. We also have a roadmap for tranplant that goes out a year. Emotions are running amok now. We are half expecting something to pluck us away from this experience at the last moment, but it seems unlikely. And there are lots of thoughts about wishing that we didn't have to do this. All this when Spener is really doing great again, mentally especially. The average hospital stay for cord blood transplant is 55 days.

Speaking of Spencer's mental state, he is incredibly bright. Every meeting we've had at Duke has been with Spencer present. Mom and Dad cannot get away from him for even a minute so we talk things out in front of him. From talking with Spencer, it seems as though he knows exactly why we are here and what we are going to do, and possibly some about what we are going to go through. He's handling it a lot better than Mom and Dad.

We've got one last nice weekend ahead of us so we'll try to get out and about.

SOMETHING GOOD THAT HAPPENED TODAY:
Thursday - While in the Children's Health Center today (Duke's outpatient clinic) we unexpectedly were introduced to Colin and his family. Colin is 8 years old. He was diagnosed with T-Cell ALL at 15 months old with a white count of over 600,000. He had a very hard CNS relapse at 26 months old. He underwent a cord blood transplant at Duke nearly 6 years ago and is doing fantastic. Our NP was shocked as she hadn't seen them for 2 years. She thought our meeting was serendipitous as we were discussing our roadmap at the time. Colin's Mom was great and she said life does get back to normal, even though it seem so impossible now.

Friday - This is something we haven't mentioned yet, but Mom and Dad's blood was tested for possible pheresis (I think I'm spelling that right). This is a very cutting-edge procedure and Duke is one of the only places in the US that can do it. It is the process of donating white blood cells to Spencer while he undergoes transplant. While this will not help viral infections it will help him fight bacterial and fungal infections and lessen mouth sores while his immune system is compromised. In fact, his white counts can show as high as 1 or 2000 during transplant. There is no risk to Spencer while doing this. The results came back and Dad is the lucky donor. He is even CMV negative (a common virus that can cause big problems). Dad will even get a catheter placed in his neck just like Spencer. (I haven't gotten a sympathy haircut yet, but I'm getting a sympathy line - even better.) Dad will donate white cells twice a week and Spencer will get them infused 6 days a week. We are very happy about this (assuming happy is still one of our available emotions at this point). It is not a normal part of transplant, but since Spencer had such a long bout with high-grade fevers at Stanford recently, the cause of which was never definitively known (possible fungal infection), Dr. K thinks he warrants extra protection.

Wednesday, April 21, 2004 10:20 PM CDT

Spencer has done two cranial/spinal radiation treatments so far and things are going well. The anesthesiologists have been working with us and Spencer to create a plan so as to have Spencer wake up as happy as possible each time. And he really has woken up amazingly well the past two times - a couple of moans and then bright-eyed, ready to go. Today we had no other appointments so we were back at the apartment before 10 AM. Pretty cool.

Tuesday was another story. We didn't have anything big or intense going on but with the radiation, lab appointments, couple meetings, lunch, and a very very long eye apointment (mostly waiting), we didn't get home until after 5 PM - our longest day yet. More appointments Thursday.

Spencer has really been perking up. He stays awake all day, chatting all the while. It's so nice to be driven crazy by him again - "What's that? Why? Daddy, come over here. I want this. I want that. Is that box for me? Let's open it. Why? What's that?". He is very very slowly getting physically stronger as well. Today he walked all the way from the office to our apartment. About 300 yards. I wish he would nap a little though. Tonight he was very tired and complained of a headache.

So things are moving along, quickly. It's a bit unnerving knowing we are getting closer and closer to transplant.

SOMETHING GOOD THAT HAPPENED TODAY.
Tuesday - Spencer seemed to start putting on the charm for the nurses at Duke today for the first time. The nurses at Stanford got the full Spencer treatment a lot, so they love him and are really attached. Since Duke is a new place with new faces, and because Spencer has been through so much lately, we've been worried about him developing the same type of bond with the staff here. It's slow but the irresistability is finally starting up.

Wednesday - Spencer almost pulled out the silly Spencer dance today. I'd give him about a 6. He wiggles his hips, head, and arms side to side and makes silly sounds with his tongue out, artistically about on par with William Hung. But there's no wonder why it's so popular. It's just fun and silly. We'll be looking for more.

Monday, April 19, 2004 11:03 PM CDT

Today Spencer had two Hickman catheters put in (a single and a double), plus a diagnostic spinal (no chemo), and a bonemarrow aspirate and biopsy. This is the first time we've had a BM biopsy done. It is a much more detailed molecular test of the marrow, and of course they have to make a bigger hole in his hip bone (1 mm) for it, kind of like taking an ice core in the Arctic. These were the last tests before transplant and so far everything has come back clear, including the bone marrow. This is really big news as it confirms that Spencer is in full remission going into transplant. Waiting for each result of all these tests is nerve-wracking, just hoping and praying there are no surprises.

I wouldn't ask Spencer's opinion on this, but the line surgery went well. He is incredibly sore right now, but that will go away in a couple days. We were worried because the surgery to insert his port back in December went pretty badly, and since this was two more lines to insert they could have been tough. The surgeon said they did encounter some trouble threading the catheters but they got both of them in fairly quickly. It is a bit sad though, because Spencer was really bouncing back, finally, when he had to have this surgery.

Tuesday morning will be a bittersweet time. It will be our first radiation appointment. We put in so much effort researching the radiation. It is one part of treatment that really comes with some tough potential late effects. but it is an incredibly powerful weapon for fighting T-cell ALL. The latest research shows that lower doses of cranial radiation (1200gy) are just as effective as the standard (1800 gy) and older higher (2400 gy) doses. If any of you remember we spent a lot of time successfully getting our dose lowered to 1200. This was no small acheivement. We were just 3-4 days away from starting radiation when Spencer relapsed.

Now we are so anxious to get the radiation done, so we can take advantage of one of our biggest tools to get rid of the disease, especially because Spencer's relapse was in the spinal fluid. But alas, now we are getting cranial-spinal radiation (700 gy), not just cranial, plus total body irradiation (TBI - 1400 gy), giving the cranial-spinal area a cumulative dose of 2100 gy, significantly more than we had hoped. At best this will cause complete sterility, a couple inches lower overall adult height, and 5-10 point drop in IQ (i.e. trouble with math in high school). Other possible late effects are thyroid trouble, lung damage, and significantly increased risk for secondary tumors, among other crazy things. But, in our situation we are relieved we are finally getting to do it, rather than dreading it. And getting through today is the farthest ahead we look for now.

SOMETHING GOOD THAT HAPPENED TODAY:
Sunday - we put Spencer in the backpack and took a very nice 3 mile hike at Eno River State Park. It is a beautiful walk along the river and the turtles were out in force. Spencer was very excited to look for them hauled out, sunning on the floating logs. We probably saw 50 of them, plus a toad, dragonflies, and butterflies.

Monday - you may know how many lumbar punctures (spinal taps) Spencer has had in the past 1 1/2 months. Today was the LAST one. And no more bone marrow aspirates as well. Duke does all follow up tests with regular blood draws. This is a huge relief.

Thanks for stopping by and please check out the new photos in the photo album, from the Duke era.

Saturday, April 17, 2004 11:34 PM CDT

We are enjoying a beautiful weekend. But it's already half over and we somehow would probably rather it not end. We have to be at the hospital at 6:45 Monday morning for line surgery. And we have early radiation appointments every day after that. So for now we're enjoying the weather. Spencer didn't feel well on Friday for some reason but seems much better today (Saturday). He is now back to his non-napping self. And I'd say his talking is officially back to normal now. Until now it sounded slow and labored, kind of like a drunk person. I think his mouth was still swollen a bit, limiting his talking motions. But now he's 100BR>
He is also walking a bit better, but he still doesn't really want to walk too much. He really starts complaining about his knee hurting after a few minutes. But we are trying to be very proactive with the physical therapy, no matter how much he doesn't like it. There is going to be a lot of inactivity the next few months.

Today, after some reading, puzzles, walking outside, and some bird watching, we headed off for a picnic somewhere, beginning with a driving tour of Chapel Hill. We ended up at University Lake for a nice picnic, complete with Spencer eating mac&cheese by himself, another sign of improvement. Then the park closed and we ended up taking a walk at another park, before coming home. Speaking of bird watching, Spencer and Dad picked up a new bird feeder the first day we were here and hung it up on the patio. It has been a huge success, and Spencer can identify several cool birds now, like cardinals, carolina chickidees, and the red-bellied woodpecker. We've also had goldfinches, white breasted nuthatches, carolina wrens, the tufted titmouse, and of course house finches. It's been a great distraction for Spencer and he truly loves the birds.

and now - SOMETHING GOOD THAT HAPPENED TODAY.
On Friday our minivan showed up. Not only was this a few day earlier than we expected but they washed it twice for us and it was in good condition. Spencer is very happy his minivan is here. And for Saturday, Spencer displayed his amazing memory again. While exploring the tennis court I told him that people usually bring their own rackets and balls to play with, just like when we bring our own trucks and shovels to the beach. Then I asked him if he remembered when I left his excavator on the beach by accident and I had to go back and get it (without Spencer). His answer was, "and some kids were playing with it...Noah was playing with it at the beach." Well this was two months ago, and Spencer has never even met Noah Hatfield, nor had we much talked about him up 'til now, even though Noah is also three years old and lives in the area. I had just mentioned this strange coincidence (that Noah happened to be at the beach playing with the excavator when I arrived several hours later) to Kerri briefly when I came home successfully with the excavator. The kid is a sponge. But I'm sure he'll want to start playing with Noah once we get back to Cambria.

Thursday, April 15, 2004 11:21 PM CDT

One of the big struggles right now is to keep on-time to our morning appointments. Today we had to leave by about 7:30 and we did okay. Problem is that all this sedation is making Spencer sleep most of the day. He's been waking up around 8pm, then by midnight he's still going when Mommy and Daddy are desperate for beddybye (I've never typed that. Is that how you spell it?). Day after day we are worn out. All next week and the following week we have 8AM appointments that include sedation.

Today we had mask making and radiation simulation. It went fine but it took a bit longer than they thought, which meant a longer sedation. We took Spencer back to the apartment because we had a break between then and some general meetings at 1pm. He slept until we left, at which time he screamed, "I dont WANT to GO!". And that was fine because he didn't really need to go. He stayed with Gramma Betty and they actually had a really great time. That was extra special for Betty because she left for home tonight but got some good Spencer time first. And especially because she has been doing a lot of the unsung work like cooking and cleaning while we're away with Spencer all day at the hospital. She and Auntie Kendi have really made the transition smooth for us.

So we had three hours of boring meetings and that was that. Friday is kind of a slower day - a couple of tests, echocardiagram and pulmonary function, then a tour of the BMT unit and we're done. Off for the weekend, which is supposed to be 80 degrees and beautiful, which it already is. We're going to make the most of it before the yukky line surgery and radiation next week.

And now for my new feature. It's called "A good thing that happened today." No matter how crummy things are I will always mention something positive that happened, medically or otherwise. Call it therapy. Here 'goes:

A GOOD THING THAT HAPPENED TODAY:
This is sort of a medical one: After five days without going, tonight Spencer pooped a giant poop. Sadly he clutched Daddy and cried "I want to go home." during the event, but this was definitely a good thing. He is so much happier right now, laughing and playing with his Thomas sticker book. Going poop = happy afterwards. We're going to up his Miralax dose to try to keep things moving, at least until he goes in the other direction with the radiation and transplant. Next time I'll pick a less fragrant topic for this new section.

And thanks again to Gramma Betty. Spencer is going to miss you.

Wednesday, April 14, 2004 4:45 PM CDT

Two more days of testing are done now. Tuesday we had a medical history and exam in the morning, followed by the world's longest CT scan. Our appointment was at 11:30 but we got there a half hour early. Since Spencer was to get mild sedation he hadn't had anything to eat yet. By 12:30 we still weren't going anywhere. There seemed to be some mis-communication somewhere, probably because we were a new patient and not everyone was on board yet. Then they didn't really get us the contrast in time, so we had to figure out how to make Spencer drink that, which we somehow did. Finally things got going and Spencer was sedated. We headed over to the CT scanner and...what do you know?...another patient was in there. There was also an LP to be done and a hip X-ray. Long story short, we got out of there at 3:30. 4 1/2 hours for a 20 minute scan. But it went smoothly.

Today (Wednesday) we had more sedation for an MRI. There were no delays there but Spencer was in the MRI machine for two hours because it was a full brain & chest deal. Then we had a neck/chest ultrasound and a pre-op screening for his central line placement that will happen on Monday. We got out of there again at 3:30, with Spencer asleep most of the time. That mild sedation drug really knocks him out. Yesterday he slept until 8pm and tonight he is asleep again after having the maximum allowable dose for the long MRI.

And Thursday is yet more sedation, full anesthesia this time for his mask making and radiation simulation. Then we have 3 or 4 meetings after that. Friday isn't too bad and Spencer finally won't get sedated for anything. Talk about messing up his sleep patterns.

The results of Tuesdays scans were normal, which was a huge relief because the scan at Stanford showed some lung abnormalities that could have been linked to fungal infection. Fortunately that is gone. The cytospin (slide) result from the LP is not back yet but the fluid is clear so far. The only odd thing so far is that both kidneys have two drain pipes to the bladder (one is normal) and one kidney is rotated, a concern for urinary tract infection but probably no big deal and we knew that already.

It only gets more intense next week, starting Monday when Spencer gets two new Hickman catheters placed. The concern there is that it might be a tougher than normal procedure because he has already had two line surgeries. And the easy veins tend to get tougher to find. Hopefully that wont be the case. And we hope that Spencer wont mind waking up with new Hickmans. He wasn't too stoked on the last one.

Finally, we are all sad to learn that one of the kids that has sent Spencer gifts and well-wishes while we were in the hospital last month has just relapsed in his CNS (with B-cell ALL). They went to the Easter egg roll at the White House only to come home and find out about the relapse. How is that? Please send Christopher some love and cheer at his website: http://www.caringbridge.org/md/chrismelko/

Monday, April 12, 2004 10:32 PM CDT

Today, Monday, was our first full day of preparation at Duke. We had a pre-radiation appointment, port accessed, labs drawn (15 vials, yikes), EKG, chest X-ray, nasal culture, rectal culture, weighed, measured, poked, prodded, doors slammed, tires kicked. And a nice long pre-meeting meeting with Dr. K.

We knew all along that this was going to be hard, probably the hardest thing we've ever done in our lives times a factor of 100. After today, unfortunately we were right. The nerves and worries are almost unbearable. We just want to crawl in a hole and not come out for at least three months. To be perfectly honest, I don't know how we're going to keep it together.

Tomorrow is a complete physical exam, CT scans, and LP, with general anethsesia. Wednesday is meeting with Dr. K, pre-op screening for central line surgery (he gets 2 of them placed, and possibly his port removed), and a tour of the inpatient bone marrow unit. Thursday is radiation "simulation" including making another mask (general anesthesia), insurance meeting, social worker meeting, family support meeting. Friday is pulmonary function testing and echocardiagram. I won't even go into next week, which starts with central line surgery and radiation every day.

Spencer is doing okay. He is still very weak in the legs and knees, including some drop-foot problems. Some of this may never go away. There are also some other nagging and potentially serious issues left over from our last long inpatient stay at Stanford that are going to have to be tested and evaluated over the next two weeks, most notably whether or not Spencer actually had or still has a fungal infection. But all in all the day went well, slow and methodical. The hospital complex at Duke is huge, and the children's clinic building is amazing. And there are people who talk funny...or maybe that's us. Stay tuned.

Friday, April 9, 2004 11:19 PM CDT

We have been beamed to a class M planet in the Gamma Quadrant, subsection Delta.. There appears to be intelligent life here. A fairly advanced civilization that has obviously had contact with life elsewhere - they drive on the righthand side of the road, Walmart, Costco, Home Depot, Outback Steakhouse, Best Buy, all in evidence. They too have been assimilated. However, gasoline is substantially cheaper.

Gramma Kristi and Grampas Ernie and Verne saw us off this morning from Paso Robles. We jetted across the country on a tiny but haulin'-ass Lear jet. Spencer was quite scared soon after we took off (along with Mommy. Daddy was a rock...not!). But he dealt with it by falling asleep 20 minutes into the flight and stayed asleep until the landing gear came down over 4 hours later. The guy still has a ways to go to get his energy back. Weather was stunning in North Carolina and Gramma Betty and Aunti Kendi greeted us on this end.

We blasted over to our new apartment at Alexan Farms, 8 minutes from Duke Medical Center. We have a quiet 1st floor unit that borders the woods. Very nice. Betty and Kendi had it all set up, including Spencer's entire Thomas train track collection. He was very excited to see it again and it is proving to be an excellent source of physical therapy since he can stand and play all around it. Spencer seems to be very comfortable here and will hopefully consider it home away from home for the next 7 months.

Tonight we got a toothbrush in Spencer's mouth for the first time in a month. He is trying to become a chatterbox again but still has a ways to go. He is still the cutest, sweetest kid in the world. He just went into hiding for a while. We now look forward to getting him back permanently. Monday starts two weeks of intense appointments that include endless meetings, tests, surgery, radiation, etc. etc. etc. leading up to our admission to the hospital near the end of the month. I'll lay all that out later. It's late now...oh, wait a minute...it's not even Ten O'clock California time. But I suppose we will be assimilated. Resistance is futile.

Wednesday, April 7, 2004 1:27 AM CDT

Smiling Spencer is back. ANC and WBC is up, fever is down. Enchilada fetish is over - cold turkey, along with all antibiotics. Mouth sores and pain medicine are tapering off rapidly. IV pole is outahere, and so are we on Wednesday. Friday flight to Duke. Of course we have some smoldering issues, namely extreme stiffness in the legs, still swollen mouth limiting talking, and an absolute refusal to go poop in spite of coalace, magnesium citrate, apple juice, olive oil, AND some pill called doalax. The dude is tough.

So pretty hectic next couple days, and weeks for that matter, for us. Hopefully we'll be too busy to really reflect on how gnarly what we're embarking on is. Really want to thank everyone who has stuck with us, continually checking in on Spencer and signing his guestbook with such positive energy. We're approaching the starting line at long last so keep with us.

Monday, April 5, 2004 4:23 AM CDT

Spencer's ANC took a dramatic jump today, up into the normal range. It went from 800 to 2800. WBC jumped to 6400. Nurse Bob even had to do a double-take. He even called the lab to confirm it was correct. It was. So that is excellent news. He definitely has enough white cells all around to heal up his owies. Now if they would just hop to it.

The mouth sores seem to be improving, but very slowly. They are extremely severe. Spencer's diet branched out even further today to a burrito and, believe it or not, a few tortilla chips. That must be a sign of improvement. To continue the slow ooze of good news his fevers were not as pronounced again today. He actually hasn't spiked a "Stanford" fever (38.5ºC or higher) since 8AM Sunday morning. That's 18 hours ago. That said I won't kid you and say his temperature is normal. It seems to have gotten down to normal a few times but he is still warm. Just less so. Baby steps.

Now for the bad news. Spencer just felt awful all day. He didn't talk much, slept nearly all day until evening, and started moaning a lot again. Worst of all, and possibly the cause of 99% of this, including the fever, is his severe constipation. He did finally get a hard poopy out about mid day (first one in 3 days) but it really hurt him, and his bum continued to hurt afterwards. The feeling is there are several sores inside there and his stool is contacting them a lot, aggrivating things. So really, until his mucocitis clears up througout his entire GI track, top to bottom, his is going to continue to have issues. He is on a few meds to soften things and stimulate his bowel but he's pretty resistant. But they do seem to be making him feel like he might have to go, and that makes him miserable. He's not going to like reading this journal entry in front of his girlfriend when he's older. Sorry dude.

That's where we stand...well Spencer's not too fond of standing right now so he's more likely laying on the bed. He's slowly going in the right direction. Thanks for stopping by.

Friday, April 2, 2004 10:59 PM CST

FATHER OF LEUKEMIC CHILD ARRESTED AFTER ASSAULT ON EASTER BUNNY AT STANFORD SHOPPING CENTER.

That's my belated April fools headline that I meant to post yesterday, but I got sidetracked by all that's going on with Spencer. Truly though, on Wednesday when I was walking through the shopping mall on the way back from getting a sandwich I saw a couple little kiddies getting their pictures taken with the Easter Bunny. My deepest thoughts were to go over there and sock that furry varmint right on his twitchy nose. Only my fondness for bunnies prevented me from doing it. Plus at about 6 foot, that was one big bunny. But it is hard to see people living happy lives in the "other universe" right next to me.

Today, in an attempt to get to the bottom of this fever stuff, Spencer had a renal ultrasound and a full body CT scan. What they are looking for is any sign of a fungal infection. The good news so far is that everything looks normal. The pediatric radiologist has to look at the scans in the morning but so far there is no sign of fungus anywhere. The bad news is that Spencer's fever has been quite evident all day and into tonight. It spiked several times to between 38.5 and 39.0. That's about 101 to 102.5. So that means we still have no answers.

Guesses run the gamut from rising ANC beginning to fight whatever's in there, to the mucositis, to the steroids, to viruses, to whatever else. Bottom line is we just don't know. The issue now is a potential looming decision to start Spencer on anti fungal infection medicine. Problem is that this medicine is very hard on a person and their organs, particularly the kidneys. We really don't want to go there but if Spencer's fever persists they're going to do it anyway, whether we know there's a fungal infection or not. We're not too happy about not knowing what is causing this. We're hoping beyond hope that he will break this fever soon...like tonight.

Spencer slept much of the day and is pretty low energy. But he seems to be in less pain, getting some good sentences out through his giant swollen cheeks. And amazingly enough Spencer is no longer neutropenic. His ANC is up to 700. Wow. And the hugest news is that he has branched out from enchiladas and chocolate milk to apple juice and even a few raviolis. Wow.

Friday, April 2, 2004 3:41 AM CST

Spencer has been doing marginally better most of the day, thank goodness. I don't think we can take too many evenings like Wednesday. You always read about how stress is unhealthy and it can cause this and that, bla bla bla. Well if so, Spencer's Mom and Dad are in big trouble. But we're hanging in there somehow.

Spencer's fever was down most of the day (not gone, but down), however it did spike up a few times, topping off at 39.1 in the evening. So in reality Spencer still has some significant fever issues. And since he spiked one in the evening it means we will not be able to travel to Duke as planned this weekend. We have a perfect Corporate Angel Network flight for Saturday that goes direct from SF to Raleigh, but alas we won't be out of the hospital. We have to be fever free for 48 hours before release. Spencer is not ready yet.

His blood pressure was also down most of the day, but again, there were times it jumped up as well, necessitating more medication. Again, mostly in the evening. The doctors are still stumped, but as the fever, headaches, and blood pressure seem to go up and down together, the feeling is there may be a pain issue somewhere. All cultures are still negative, however, the fever is pretty high for this to be an only explanation. It's very frustrating.

On a better note, Spencer's mouth sores don't seem to be bothering him "as much". He can eat pretty well, opening his mouth wider and chewing better. He is also managing to talk a bit more. This could also be because of better pain control. We have switched him from mostly IV morphine to mostly oral methadone, for expected travel purposes. His overall white count continued upwards, but ANC was back down to 300. And he needed a hemoglobin transfusion this morning. If his counts continue to climb this will be a very good sign.

Finally, this is not really the thing to aspire to when you first have a kid, but given our circumstances we are proud to announce that Spencer is the Kid of the Month on the lighting children's lives website. Click the link to check out Spencer and his story. And check out the organization, which spreads emotional support to kids with serious illnesses. Thanks to Melanie for all she does with this.

Thursday, April 1, 2004 2:47 AM CST

BANG, WHACK, CRACK.

That sound you hear is me banging my head against the friggin' wall in an attempt to deal with life. Tranquilizers may be in order to keep the head from spinning too much.

We have been dealing with some complications this afternoon and evening. Spencer had been complaining of severe headaches, which is accompanied, not surprisingly, by very high blood pressure. He as been getting several meds for this but the pressure keeps bouncing up and down. We don't know what's causing it but it is causing Spencer much discomfort, as well as the parents. Kidneys were initially suspected but his levels for that are good. Spencer is getting some treatment to keep things functioning smoothly though.

To go along with that bit of news is a sudden high-grade fever. It has spiked as high as 39.8 (about 104F). It has stayed really high all evening although it is down to 37.9 right now, with tylenol. This also sparked some action around here - line blood cultures, peripheral blood cultures, mouth cultures, nose cultures, new antibiotics. We don't know what is causing this either. It may be some virus.

When the docs looked in Spencer's mouth this evening it was shocking. Just unbelievable. Way worse than I had seen before. The whole middle inside of his cheek was peppered with bright white sores. It litterally looked like an extra row of teeth, and all swollen. What does that feel like? How does he eat anything at all? Fortunately his tongue and gums and throat were much better and it looks as though healing is going on. He is talking a bit now, and he is very emotional.

With this fever we're expecting his platelets to get burned up too, so a transfusion could be in the cards this morning. I wouldn't be surprised to see a drop in his white count too, since he's doing so much battling. Improvement on paper is no longer enough for us, we are desperate for physical improvement. And it's definitely a blow to go backwards. We'll figure this out tonight and tomorrow and get better, meanwhile...BANG, WHACK, CRACK...

Tuesday, March 30, 2004 8:21 PM CST

Spencer's ANC took another great leap today up to 300. Now that's a trend we can live with. He also had his last spinal tap with triple intrathecal chemo today, as well as his bone marrow aspirate to check remission status. That comes to ten, yes ten, spinal taps in five weeks. And we used to worry about the toxicity of just one. But he is in remission, officially, with clear marrow and spinal fluid.

We are hopeful for a quick physical recovery for Spencer now since his counts are rising. It's too soon to really say but he does seem marginally better. He ate a ton of enchiladas around lunch time. Never seemed to end. He's had a great nap this afternoon too. Last night he even had me put his play rug up on the bed so he could play with his cars. When Mommy sneezed today he said, "bless you, Mommy" in a thrashed squeeky voice, but oh so cute. He said a few other things today too. He's making progress at last.

We're thinking of possibly getting out of the hospital by Friday, maybe? Then trying for travel across the country over the weekend. It's all up to Spencer. Everybody at the hospital is very happy with how things are progressing for the tough little guy. And thanks so much for all the well-wishes, in every form, that you have all...wait, I better get my North Carolina thing going...that Y'all have been sending Spencer's way. We will get around to big thanks for everybody soon.

Monday, March 29, 2004 4:15 PM CST

Well, we do have some improvement to report. Spencer's ANC is up to 140, which is a tremendous jump and we're all very optimistic. Even the doctors were doing the ANC dance. Tomorrow's counts will be telling of any trend. On the down side Spencer hasn't improved much. Maybe a little. Mouth sores are still bad, low grade fever persists. However, he does seem to be more active. He spent 1 1/2 hours in the play room yesterday. He spent the entire time cutting paper into teeensy tiny little pieces with a pair of scissors. We had to take the scissors home and now our floor is covered with teeensy tiny pieces of paper. It's great he has a project. He's expressing interest in the playroom again today, in fact, he voluntarily left the room and walked all the way up there a little bit ago. Unfortunately not only was the playroom closed at the time, but he had to stop for a painful poopy half way there. The playroom is now open but Spencer fell asleep. Hopefully he'll wake up in time to catch the EGO (evening glass-off for all you non-surfer types).

Saturday, March 27, 2004 9:17 PM CST

Waiting, waiting, waiting. We are stuck in the bazaar sameness time warp of waiting for Spencer's counts to come up. Same thing, day after day without getting anywhere. His white count is actually up to 1.0 but the ANC is slightly down to 40, but the mouth sores are going nowhere, maybe even backwards. It's like that Bill Murray movie where each time he wakes up he lives the same day over and over.

Dad is back at the hospital after shipping a bunch of stuff to North Carolina, on the assumption that we'll ever get out of this hospital. Mom has not been out of the hospital at all for four days, but we have a private room. You take the good with the bad.

What else to report? Nothing. Same ol' - same 'ol.

Friday, March 26, 2004 1:14 AM CST

Big news yesterday, and some more news today: Spencer has an ANC now. It's not much but it's a move in the right direction. They don't calculate an ANC if the total white blood count is below 0.5. Today it was 0.6 so they calculated an ANC an it is 50, not too bad. 500 is the goal.

It's tough to tell if Spencer is feeling better or not. He is having times where he is walking around better and interacting. But then he goes back into moaning and being miserable. Frustrating, but he should start improving as his counts improve. Mom and Spencer got to move into a private room today, which makes Mom so very happy.

And here's a hospital story for you: We've always suspected (because we know our kid) that Spencer's mouth sores were caused by the methotrexate (which he is getting intrathecally). But some of the doctors think it's more the donorubicin and his low counts in general. When he got bad mouth sores in November it was because his methotrexate level did not clear enough with the rescue drug leucovorin (sp?) before we were released. Subsequent high-dose methotrexate rounds were cleared better and Spencer never got mouth sores again.

Now he's got bad mouth sores (super bad), but since the methotrexate is intrathecal (in spinal fluid) and not IV the assumption was something else was at fault. Well the Drs at Duke suggested to Kerri that they should check the MTX levels in his blood to see if he needs leucovorin. When Kerri suggested this to the on-call doctor things didn't go so well. The Dr went off on Kerri, saying patients don't decide the course of action for care, and to basically butt-out. Wrong thing to say to Kerri.

Don't get me wrong, Lucille Packard is an awesome hospital with great doctors. We are in the best of hands, but when you're there 24/7 for weeks on end, not everything is going to be perfect. Long story short, Kerri called Duke back and suggested Dr. K request through Dr. Link that they check methotrexate levels. Low and behold a nurse comes in mid-afternoon to draw some blood. End result - Spencer was not clearing his methotrexate and needed leucovorin as a rescue drug. This will probably speed Spencer's recovery quite a bit.

Wednesday, March 24, 2004 7:46 PM CST

Dad reporting here from Cambria, where Spencer is not. This is the first time I've not been with Spencer while he's at the hospital and I don't like it - not one bit. I want to get back up there. But what I do like is the news I just got from Kerri. She finally got the word from the doctor that Spencer's slide is clear. Spencer did it! Stud. Spinal fluid is officially clear all the way.

That breeze you just felt was us breathing a deep sigh of relief - the first breath we've taken for 3 1/2 weeks. Now if Spencer will just start feeling better we can get on with things, and start holding our breath again. More later.

Dad

Tuesday, March 23, 2004 6:44 PM CST

Spencer had his spinal tap (aka LP, TIT) this morning and things went well. We have the preliminary report and it is great, even better than last week. No white cells, everything in the normal range. Unfortunately even though the lab-techs can't find anything, they don't stop there. They call in the big docs when the slide comes in, who look with their super-duper microscopes to seach for the tiniest evidence of blasts. We'll get those results tomorrow.

Otherwise Spencer has got just about all he can handle going on. His mouth sores are still very bad, although there does seem to be some improvement. He is talking slightly more now. He's probably gotten 6 or 7 sentences out today. His butt sores are still very raw and he seems to be having severe discomfort down there, maybe from some sores inside. His back is so stiff that he's scared to walk. We had a heck of a time getting him to do anything with the physical therapist today. We have to force him to get out of bed and moving around a few times a day. The constant moaning seems to have lessened today and it's really nice to hear his cute little voice again, albeit briefly. He gets pretty upset when anyone comes to visit. Don't take it personally if you were one of those people. But he was pretty good when Uncle Alan stopped by on Sunday.

All of this should improve rapidly if only his ANC (absolute neutrophil count - the important white cells for infection fighting) would come up. His overall white cell count is starting to come up but is hiccupping. It bottomed out at 0.3 two days ago, came up to 0.5 yesterday, but dropped to 0.4 today. It has to get to 0.6 to even start calculating an ANC. There is a feeling from the doctors that his counts could rise quickly once they decide to do so, which brings us to his schedule.

Timing a flight to NC with a rising ANC and release from the hospital is impossible. We're just going to have to get lucky or pull some serious strings. Duke has been keeping in close contact and are anxious to get him over there asap. We are too, especially since Stanford choked in the second round and Duke is still in it. The flights are extremely hard to come by, but we do have one this coming Sunday. That is perfect timing but we have serious doubt about Spencer being able to go by that time. The only thing we can do is sit and wait for now. We are so ready for Spencer to at least start feeling a little better. That is really starting to wear on us. We can only imagine how over it he is. In the meantime Dad is heading home for a couple days to pack and ship things, making sure no delays happen because of our readiness, or lack thereof. When Dad get's back we'll be able to scramble at a moment's notice. Bring it on.

Saturday, March 20, 2004 10:51 AM CST

Spencer's cytospin slide from his Thursday LP was not clear still. Of course we would have liked to see it be clear, however it doesn't come as much of a surpise. If the trend of how the blasts are responding to the treatment was interpolated out through the past, present and future LPs it seems reasonable that Monday's LP would still not be totally clear. The good news is that the white count is zero with a very low overall cell count and the number of blasts found in the slide continues to delcine at about the same rate with each LP. They are apparently getting much harder to find. This trend in a positive direction is good and there are so few blasts now that a clear slide seems attainable next week. Also, while things are going more slowly than hoped, it will not have any affect on our trip to Duke or time-table.

Speaking of that, what will affect our time-table and trip to Duke is Spencer's ANC. He is bottomed out right now and we're hoping for some signs of an upward trend over the weekend, both from a standpoint of getting out of here and so Spencer can start feeling better. In some ways he is doing better, such as being more alert and active during the day. We even went to the playroom on Friday to watch an entertaining singer. Spencer was interactive the whole time, clapping and doing other arm motions on cue just like the other kids. That was great and somewhat of a surprise. On the other hand, things like his mouth sores, ability to eat, and pain level do not seem to be improving. We are at wit's end with that and I'm sure he is too. Here's to improvement over the weekend. Hope everybody else has a good one as well.

Thanks for stopping in.

Thursday, March 18, 2004 9:26 PM CST

Poor Spencer continues to be miserable but things are continuing on track. The spinal procedure went well early this morning and the initial test of the spinal fluid is very clear. Zero white cells and even more encouraging is a very low total cell count. The slide won't be ready until Friday but Dr. Link thinks things are excellent. We're holding on to that as Spencer continues to struggle with mouth sores, sore back and joints, and bottom rash.

Overall it seems the mouth sores are not worsening and possibly are a bit better. However, they have resulted in some things like much of the skin being gone on one side of his mouth, and a big skinless crater on his bottom. These things are not healing because of Spencer's low white count, which is 0.4 with an ANC of zero. By our calculations we are hopeful that today is right about rock bottom for his white count. We'd like to see them start rising over the weekend, but with how we've hammered him our calculations could be off. Once they start rebounding it's likely his sores will heal up. Then maybe we'll get our kid back.

Yesterday we actually got a smile out of him. He has the Thomas train set "Boulder Mountain" but has never seen that episode on any of the videos. Greg Doane from the ALL listserve stopped by and let us borrow a couple of his kid's tapes. One had the Boulder Mountain episode on it. When it came on Spencer couldn't contain himself so he pointed excitedly at the TV and smiled. When we made a big deal out of it he got embarassed and ducked under the covers. That was the end of that. But it's a start. Thanks Greg.

Today Gramma Kristie, Gramma Betty, and Auntie Kendi stopped by. Unfortunately Spencer's not too responsive to visitors but it's nice they got to see him. So now we wait for the slide result, and hope Spencer get's better. Plans are in the works for a move to North Carolina. Thanks for stopping by.

Wednesday, March 17, 2004 1:40 AM CST

What to say? Is this really happening to us? To Spencer? To all these other kids in this ward? In this hospital? In all the other hospitals? Is it for real? I try to keep these journal entries straight-forward, upbeat if possible, and not too self-pitying. In other words, I never really cut loose and say how I really feel. But rest assured I'd rather be surfing at the Farallons, or vacationing in Iraq, or hangin' at the Hanoi Hilton in the early '70s. The loss of control over the health of the sweetest little kid ever that you love more than life itself is utter agony.

'Nuff said. On to the straight-forward bit.

Spencer seemed a tiny fraction of a bit better in the mouth sore department today. He ate cheese enchiladas 6 different times, about half an enchilada at a time. He also drank well during his meals. But he continues to be exceedingly stiff, barely able to move. He can't roll over in bed. We've got the physical therapists on it now. We actually went to the physical therapy room, where Spencer had never been before, and got him playing for 20 minutes or so, albeit with a stoic stare on his face. He bowled a few frames, popped a few bubbles, flew a few planes, and zoomed a few race cars. Then he was done. We did get him to walk most of the way back to 2 North.

After that he mostly laid motionless the rest of the day, asleep more often than not. They turned up his morphine pump infusion rate around mid-day but he was so wiped that we had them turn it back down this evening. He has a couple bad sores on his butt that we have to really goop up with cream. And now he's got some serious diarrhea issues. Lots of intestinal tissue coming out because of the mucucitus thing (same thing as the mouth sores.) And his belly got really distended tonight. Sorry for the imagery but it's affecting his whole GI tract, top to bottom. His ANC is still zero and may continue bottoming out for another day or two. It's anybody's guess how fast his counts will rebound. But until they do rebound we are vulnerable to complications like we've been having. He does still have a slight fever off an on, but not as high as a couple days ago. All cultures have come back negative so far. And he moans a lot when he's awake, kind of like we moan when we have the flu.

And that's just how Spencer feels from the chemo. His spinal fluid is clear with the first test they do on it, but when they spin it down to get a denser sample they are still finding blasts. So he is not in remission yet. This is taking a long time but the doctors are hopeful he will still clear, and soon. The good news is that he continues to go in the right direction. They had a much more difficult time finding blasts on Monday than they did Thursday. They have to hunt for them now. But they can still find them. Hopefully that will not be the case this Thursday. Spencer is wiped out but it's clear spinal fluid that we need most. All hands on deck for a clear slide on Thursday.

That's the update, not real upbeat, that's for sure, but straight-forward I hope, with the exception of the first paragraph. Sorry about that one. Thanks to everyone who is sending all their great positive thoughts, notes, emails, posts, cards, prayers etc. And big thanks to Kathy from the ALL List-serve who stopped by to see us today. It's the first person from that list we've met in person. And thanks to Jody for stopping by to share her family's transplant experiences with us. She is a former windsurfer and first met Spencer by seeing his picture in Windsurfing Magazine last month. Her son Ben (and other tranplant kids like Alex, Isaiah, Chloe, and Justin) are our role models and their words are invaluable to us.

Go Spencer!

Monday, March 15, 2004 3:54 PM CST

Here we sit in the hospital. Spencer is out like a light after his morning spinal tap. It's 85 degrees and beautiful outside. Joy of joys Spencer just got some more of that wonderful vincristine, the chemo that makes his joints hurt and makes him stiff as a board. But the biggest disaster is that our TV seems to have broken. They're bringing in some giant TV on a cart that is taking up the whole room and has the closed captioning stuck on. They said they'd swap out our other TV tomorrow.

******Just got back from some interruptions that lasted a couple hours. Now Spencer is watching Chocolate Percy on our new TV. All the 3 year olds out there will know what video that is.

Yesterday Spencer spiked a fever while in the hospital - 101.5. That earned him some antibiotics and now means that we cannot be released from the hospital until his counts rebound - some rule of theirs. That could potentially be 2 weeks. This could pose a problem with Duke but we are just going one day at a time. His ANC rose from zero yesterday to 0.1 today but that means nothing. At best it'll take a week. For now Spencer feels really bad. His mouth sores are not going away but he is very hungry and is forcing some stuff down once in a while. He only will eat cheese enchiladas. The sadest thing is he has a permanent frown on his face right now.

We also just got a roommate. We were thankful to have two days with no roommate. It turns out to be a kid that we were next door to for weeks during diagnosis. They never talked to us then so it might be a little wierd. I hope not because we're stuck here for a while.

We are continuing to get things going as far as Spencer's transplant is concerned. We're not having much luck getting the two institutions to communicate with each other but it that will change. We're also trying to monitor how Spencer is doing as far as remission. More later on that. For now we need Spencer to get better.

Sunday, March 14, 2004 2:05 AM CST

Since diagnosis the hardest Spencer has been hammered with chemo is right now, during his re-induction after relapse. That was my thought when we went into this a couple weeks ago, and I'm certain of it now. Spencer is a tough little dude and he is hammered. So I was suspect when the whole thing was supposed to be done on an outpatient basis. Well, guess what? We were admitted today. The mouth sores just got too bad.

Spencer's pain seemed to go up a couple notches this afternoon and was unrelenting so we stopped by the hospital. Dr Quo came out to our car to take a look in Spencer's mouth. When he pryed it open it looked like some photo in a medical textbook. It was nasty. Not so much the sores on the gums, but the tongue was just disgusting - big white sores all around the outside and tons of little white spots all over the top. How much that hurts I can't even imagine. It had become too difficult for Spencer to either eat or drink so it was no surprise that when Dr. Quo came back from a consultation with the attending oncologist he said we had to get admitted.

We had actually seen this coming over a week ago. Once we knew Spencer could get mouth sores from getting methotrexate intrathecally (spinal taps), we knew it was bad news. It was bad news because his intrathecal schedule was for two per week until he was clear, then two more. That meant that he would continue to get more methotrexate while he had mouth sores so there was no way for them to clear, plus he had a decreasing white blood count due to his other chemo. Add that all up and we were headed for pain medication and IV fluids around the clock. Sure enough.

Unfortunately things happen in slow motion when you get admitted. We stopped by the hospital about 5 PM, had to go via the ER, got to our room about 8:30 PM, and finally got Spencer some morphine by about 11:30 PM. Only 6 1/2 hours of Spencer in totally agony. But things should improve for him now. We have no idea how long we'll be inpatient, but probably through our last intrathecal on Thursday. Kerri will probably miss her Grampa's funeral now.

So, that's where we're at now, pretty much doing the same thing but from a slightly different, less comfortable location. But it's good because we need to keep Spencer in tip top shape right now as we prepare for the next step. More later, it's been a long afternoon and evening.

Dad

Friday, March 12, 2004 2:02 AM CST

So, yes, the great news is that the white cell count in Spencer's spinal fluid was zero. However, we have not gotten the slide result, which should be in on Friday. That needs to be negative to really say remission. Either way Spencer still has two spinals scheduled for next week, but the MRI is off. We are definitely pleased with all this...well, not two more spinals, but Spencer's progress. But it is all tempered with how lousy Spencer feels. The mouth sores don't look as bad but they are still really hurting him. He's bummed most all the time...rarely says a word...sits around and mopes a lot. It's freaky and we don't like it.

Does good news always come with bad news? Unfortunately Spencer's great grampa Ernest died today at the age of 94. They don't make them like Ernest anymore, and a little bit of San Luis Obispo county history died today as well. A little background - Ernest's father, Florino Dalidio, came to Cayucos from Someo, Switzerland in 1888 as part of the Swiss-Italian immigration to the area. He worked as a dairy farmer. Ernest was born at San Geronimo Creek and grew up in Cayucos before moving to San Luis Obispo. He worked hard all his life, building up the ranching business that his only son, Ernie Jr. (Spencer's Grampa) eventually took over. Ernie had two daughters - Kerri (Spencer's Mom) and Kendi. Spencer was the first child born into this side of the Dalidio family in 40 years - a fifth generation San Luis Obispo county native (not counting his Dad's surfer bum from Laguna background).

Ernest was still driving less than a year ago, having learned to drive when he was 9 (82 years). Spencer still has two great grandparents - Great Gramma Rose (Ernest's wife of 70 years) and Great Gramma Laurine (Gramma Betty's Mom). We are hoping to attend the funeral, but it may not be possible depending on when it happens. The Dalidio family is overwhelmed on both ends. When it rains, it pours, as a cattle rancher might say.

We'll be concentrating on our next steps now, possibly moving up our trip to Duke. But we're still one day at a time. Thanks so much to everyone who has been following Spencer's journey.

Mom, Dad, & Spencer

Thursday, March 11, 2004 2:52 PM CST

Spencer's spinal fluid is clear!!!!!!!!!! A big fat Zero!!

Thursday, March 11, 2004 1:10 AM CST

Oh boy, feels like the whole weight of the world crushing down on us at all times.

Spencer was supposed to have the whole day off today, and what a day to have off. Just unbelievable weather. He did okay in the morning, trying to eat despite his mouth sores. That doesn't last too long. We hit a few golf balls. We even got the paints out and painted some stuff on the deck outside. He was so intense about painting. I've never seen him so determined about that before. Then Dad and Spencer even went for a bike ride all the way downtown for a milkshake and a sandwich for Mommy. Spencer wouldn't touch the shake but indicated he wanted some sandwich. But all the while he doesn't make a sound. It's strange. He's normally just a non-stop chatterbox. He is very upset about his mouth sores. He's really being slammed. We're giving him steroids that make him crave food all the time, but he has bad mouth sores that make it impossible for him to eat. No wonder he's so bummed all the time. Can you imagine? His sad demeaner is really hitting Mommy hard.

Since he didn't eat pretty much all day Tuesday and was not eating much today (although it was an improvement) our NP wanted us to come in for some IV fluids and some morphine. We did that and right when we got to the hospital we got some pretty scary news. The initial bone marrow donor search came back and there are only 5 potential donors in the entire US. And this is a low-resolution match. Further bloodwork has to be done on the five and it seems the odds of a good 6/6 match is very low. Although our NP had a kid one time with only one possible match, and he was a match. Our concern immediately turned to the cord blood match. Would this be an indication of that too? Particularly since the bone marrow registry is many many times larger than the cord blood registry.

I can tell you it was an uneasy hour or so. But somewhat coincidentally Dr. Kurtzberg at Duke University called to report her match search. We breathed a huge sigh of relief when she said she had several 5/6 matches for us which were excellent with good cell density (cell density is critical for cord blood, but a 6/6 match is not). She reserved the two best cords for Spencer. This is the best piece of news for a while. We really wanted a 5/6 or 6/6 match, not a 4/6, and we've got it, several of them.

But in more pressing matters (what can be more pressing than that, right?), Spencer gets another LP in the morning and we really are hoping that he will be in remission. Please send all your kind and positive thoughts and prayers Spencer's way for this defining moment. We really need this one.

Spencer would really like to thank you all for keeping up with him, but he ain't opening his mouth for nuttin' right now. Please accept thanks from Mom and Dad.

Wednesday, March 10, 2004 1:10 AM CST

We didn't get a direct answer from Dr. Link about how Spencer's slide looked from his Monday LP but he told our NP Stacey that things are looking good. We had a long meeting with the head of Stanford's pediatric Bone Marrow Transplant program today. We really hadn't gotten a warm and fuzzy feeling from her before (we saw her quite a bit when we were first diagnosed) but it was a really good meeting today. She was very good about both listening to us and telling us what she needed to say. We came away with much more confidence about staying here for transplant if it comes to that.

At the moment we still need to weigh tranplant urgency with what types of matches come up in both bone marrow and cord blood. We expect to have some preliminary information possibly by Wednesday. We are still fairly certain that cord blood at Duke is the more likely scenario given our circumstances.

Spencer played with the child life worker while we were in the meeting and did very well. Once we got home it was obvious that the mouth sores are no longer minor. They are very painful for Spencer and his tongue looks awful. It lookes like some jaggedy saw blade. We can only imagine how much it hurts. We normally complain when we have just one little canker sore or something. He's got them peppered all over the edges of his tongue and his lower gums. He essentially didn't eat at all today, and drank very little. It is essential that he get lots of liquids to help clear the chemo. It is very obvious that this is the most important factor to reducing his negative short-term effects after chemo rounds. Now we're worried, but we were happy to see him get up to eat a few bites just before bedtime. It's the methotrexate that seems to give him mouth sores, but we were a bit unprepared for these since he is only getting the MTX with his spinal taps. I guess that doesn't matter.

Wednesday should be a day off for Spencer unless we have further problems with his mouth. We ended up in-patient for those one time already. The weather is beautiful still so we'll see how it goes. One day at a time.

Thanks again for sending all your positive thoughts and prayers. They are working so please don't stop.

Mom, Dad, & Sprocket

Monday, March 8, 2004 7:31 PM CST

It's late afternoon on Monday and Spencer had a very long day at the hospital. He's pooped. In fact he fell asleep already, poor guy. Not the experiences we had planned for when we had a kid.

Anyway, the news is not perfect but it's pretty good. Since our oncologist Dr Link was here today we were able to get a little more in-depth about acheiving remission. Apparently we haven't been looking at the results quite right up to this point. So the number we are concerned with is the white blood count in the spinal fluid, plus the additional analysis when they do some spin down thing and a stain. This usually comes back either positive or negative for leukemic cells. If your white count is much above normal it's pretty obvious that this stain will come back positive. Normal white count in the spinal fluid is 0 to 5, most kids are 0 to 1.

First thing you want is to get the white count down, then wait for a negative stain. Spencer's white count was 96 when the relapse was diagnosed, which coincided with some intrathecal therapy. It was down to 16 when he got his first TIT (triple intrathecal therapy) last Monday. It was down to 15 last Thursday when he got his second. And today it was down to 3. That is great but not perfect. Although 3 is within the normal range, we know it's not normal because of the relapse and we want it to get to 0 to 1. So at 3 at this point it is likely the stain will still be positive, which won't come back until tomorrow.

Now, what to make of all this? Obviously the trend is great with the exception of the slow drop between the two TITs last week. And we are cautiously optimistic that on Thursday there's a great chance his white count will be down to 0 or 1, with a great chance for a negative stain. That would be remission. However, we do get a feeling from our oncologist (just a feeling) that he would have preferred a faster response. We know that with a relapse you are dealing with more resistant leukemic cells so it's expected you would have a tougher time getting rid of them. And Spencer is not getting too many more drugs in his CNS than he was getting all along. He's getting a couple more, and the others in higher doses. So you're not doing all that much new save for dramatically increased frequency. And, we tentatively have an MRI scheduled on Friday in case his fluid is not clear. This is in case there is some physical reason the chemo drugs are not covering every region of the spinal fluid. If he is clear on Thursday there will be no MRI. But the fact that we have it scheduled makes us a little uneasy with the Dr's take on Spencer's progress. Overall we are breathing a bit easier than we were over the weekend and are optimistic, but we are not in remission yet.

Then there's Spencer. We slammed him with more systemic chemo today too. He is getting a yeast infection under his diaper and he is starting to get mouth sores. These so far are minor but we don't want them getting worse. And his tummy is not feeling too well. And he has no energy. He did have an echocardiagram today as well, and his heart is holding up really well to this assault.

Tuesday morning we have an appointment with the transplant team at Stanford. Oh, and Spencer's HLA typing came in today, which was fast. Now both Stanford and Duke will be looking for a match.

That's it for now. We are still holding out breath. Thanks for all your support through this.

Monday, March 8, 2004 1:44 AM CST

Sunday night -- we're now back up in Woodside ready for a big day on Monday. LP procedure with a starving Spencer in the morning and an echocardiagram appointment in early afternoon, plus some chemo in the clinic. Please everybody send positive thoughts Spencer's way so there are good results from his spinal fluid.

Spencer rebounded nicely on Sunday and had a pretty good day. He got some more poop out early and it really seemed to relieve his gas and bloating problems of the past few days. He even really wanted to go to the beach, and it was such a nice day. Dad and Spencer hit San Simeon cove with plastic trucks and loaders by about 11:30 AM. This was a nice time as not too many other kids were at the beach then. Of course he wasn't full of endless energy but he had fun. We even saw our friend Dennis the bubble guy. Spencer waddled down the creek to ask if he would blow some bubbles for us. He popped bubbles for a few minutes and then hit the wall. So we had about an hour of good beach time.

He was pretty quiet the rest of the afternoon but not totally wiped out. Grampa Ernie came over while we were packing and they found time to cruise around the backyard and such. Spencer's sand box is so unused now that weeds are popping up all over the place, including a little oak tree. The little tiny ones actually sprout up all over because of all the scrub jays and stellar jays burying the acorns. The squirrels sometimes bury them too but they're usually so greedy that they eat them up right away. Spencer uprooted the little tree, acorn and all, and Ernie planted it in a little pot for him.

Once we got going Spencer had a good session of fish and french fries before falling asleep around 7 PM. I think he's going to be up very early demanding food. I tried to prepare him for his procedure in the morning by being honest, telling him we wouldn't be able to eat in the morning. And that he really ought to eat a little something before midnight. But alas, he was too zonked by the time we got to Lisa's cottage that there was no way he was going to eat anything. Hopefully there won't be too many delays before the procedure.

Thanks for stopping by, and - send all your positive thoughts.

Sunday, March 7, 2004 2:13 AM CST

Spencer had a pretty downer day today. No energy all day, was hungry most of the time but wasn't able to eat much, had tummy cramps and gas all day but finally got a giant poop out in the evening. He has had chronic problems with constipation. This cheered him up for a bit but then he decided he was going to bed...and he did. So here we are in a low emotional state and Spencer feels lousy and is sad too. Ouch.

We did head to Morro Bay for an appointment with someone who is going to try to help Spencer in some non-traditional ways. She is great and gave us a small pick-me-up. I suppose there's part of us that is not content to feel as though we're just "along for the ride". I know we have a huge responsibility to guide Spencer through this and do all the right things as far as appointments and medicine doses and such, but we need some more feeling of direction and control, not just as caretakers while the doctors do all the diagnosis and treatment plans. Am I making any sense?

Anyway, that's what we did today and we're happy about it.

We'll head to Stanford Sunday afternoon and get going on Monday with some more treatment. For now we're still holding our breath. Four days without breathing is a long time.

Thanks for checking up on Spencer.

Saturday, March 6, 2004 1:14 AM CST

Spencer had a pretty good day today all things considered. He woke up early in a very good mood and was anxious to eat his Wheat Thins and cheese. We need to identify his chemo rounds by his foot fettish afterwords. Once or twice it was nothing but bean dip, breakfast, lunch, and dinner. Once it was tuna treats (tuna and cheese on wheat thins). Once it was Doritos. Once it was just plain fish with tartar sauce. This time it is Wheat Thins and cheese, although he did eat quite a bit of fish and chips from his favorite restaruant at lunch (he ate in the car).

After breakfast we played with his Thomas trains then we went out to pick up some packages and then we went to pick some oranges at a local ranch. He picked about 20 tangelos and thought that was the greatest. He's not eating them though. And Dad is making fresh squeezed orange juice all the time.

Then he informed us that he wanted fish and chips...err, excuse me, fish and french fries, from his favorite restaurant - Old Stone Station. Not much was going to get in the way of that one, and we could tell not to try to thwart it. So Dad finished his business stuff and we all headed out. Shipped the packages, got the takeout food, which he thankfully ate, and we ended up at San Simeon cove for some beach time. It was beautiful weather. The wind died right when we got there and it warmed up nicely. And surprisingly Spencer played pretty well with his trucks and loader, and the shovel. The beach was empty. He suddenly tired but after a lot of discussion we got him to agree to a packpack ride out to see the butterflies. (uh oh, I'm starting to cry). He lit up when we got there.

So that was more energy than he's had for quite some time. But by 4 PM or so he crashed and mostly slept the rest of the day and night, waking only for a few Wheat Thins and cheese. It's so awkward to see this cute little ball of fire just curled up not wanting to do anything. Grampa Ernie came by with Peaches in the evening and he didn't do much more than open his eyes and go back to sleep. It makes a difficult situation that much worse.

Even though it was a better day Mom and Dad are still struggling to get through the weekend. Thanks to everyone who has sent their support through the guestbook lately. Unfortunately they are all right, this is the most difficult thing anyone could ever imagine having to go through. We will try to keep busy this weekend and focus on Spencer in the moment. He has an important appointment on Saturday with a very special person, and then the plan is to stop by to play with his buddy Matt, who is a big train buff as well.

Thanks to everybody again.

Friday, March 5, 2004 2:01 AM CST

It's been a tough day for both Mom and Dad and neither of us are feeling too hot. The emotions of all this sometimes just come over you in overwhelming bursts. It's difficult not to become paralized by your fears.

Spencer had his second triple intrathecal (lumbar punture) today, plus the leg shots, both while under anesthesia in the APU (ambulatory procedure unit). Spencer was starving as usual and there were delays but it went off. We also decided to take Spencer home to Cambria for the weekend. At the very least Spencer won't be spending much time in Cambria for a while and since he loves his house so much, and is most comfortable here, we went home.

We got kind of a slap in the face just before we left when we were faxed the results of Spencer's spinal fluid. The blast cells were down a tiny tiny bit but it was essentially unchanged from Monday. This was a bit of an emotional blow as now we don't know how easy achieving a second remisson will be. Perhaps we were two steps ahead of ourselves, which we kind of have to be. But we are both sick to our stomachs and will be 10 times as anxious on next Monday's LP. His CNS treatment is very aggressive and we need to see some progress. The nurse told us not to be discouraged as there are reasons for this. Easy to say, tough to do.

Spencer is not feeling well at all after all his chemo and procedures. He will jump up with some bursts of energy from time to time but it only lasts 5-10 minutes. He's worn out. So we're worn out too. And this is only the beginning. In fact, it's before the beginning. Keepittogetherkeepittogetherkeepittogether.

We have to recharge to focus on the positive. Spencer needs us to do that and today we failed him. I'm going to slap myself in the face really hard and start new tomorrow.

Wednesday, March 3, 2004 2:07 AM CST

We had a day to hang around the cottage all day. Spencer had fun hitting golf balls in the morning, and he did a few new puzzles with Gramma Betty, but otherwise he is still very low energy from the combination of the last chemo round and his bma pokes in his back from his Monday procedures. He would pathetically waddle around all stiff and sometimes say stuff like, "my back hurts 'cause they poked me. Stacey poked me." So Stacey, he knows it was you. But don't worry, he doesn't hold it against you. Good thing he's only 3. He should be getting his energy back with each passing day.

It was a long day of waiting for a call back from Dr. K, head of the cord blood transpant department at Duke. When she called early evening she had already done some of the legwork and we are officially pushing forward for this type of transplant at Duke. We're still keeping any other options open, like proceeding to look for a bone marrow match, but this is our first choice and are proceeding on that schedule. First big hill to climb is to quickly get Spencer back into remission. Everything hinges on that, plus the cord blood match. His re-induction protocol ends on March 28 and we should know about any cord blood matches well before that and possibly marrow matches. If those two things go as plannned we will be headed to North Carolina the following week, probably for a minimum of 4 months.

Many things will have to go right for things to proceed on schedule and I will mention those things in future journals as the process continues and we get more familiar with it. For now we are filled with fear and excitement at the same time. I have (in some former forgotten life) surfed and windsurfed 25+ foot waves in sharky waters, competed one one one against all the windsurfing world champs, Naish, Dunkerbeck, Goya, Polokaw, Pritchard, Angulo, I have freedived in bottomless blue water full of big fish, but I have never, never, never, never experienced a fear anything like this. It is all-consuming. But at the same time we are filled with optimism and hope and feel we are truly being offered a second chance. Spencer is strong and the medical advances in cord blood have really taken off in the past few years with some amazing results being achieved. We know without a doubt that this is what we need to do and we will get through it.

It's no picnic though.

Tuesday, March 2, 2004 11:39 AM CST

Spencer had another very big day on Monday as we went in for a big blood draw that included cbc, chem panel, and HLA typing so they had to take a lot of blood. Mom and Dad also had draws for HLA typing in the unlikely event that we would be a bone marrow match for Spencer. Then he had to go to the APU for a bone marrow aspirate and LP. Of course he was starving the whole time (couldn't eat before the procedure) and that made it tough. He was very mad. We also had to squeeze in a shotgun meeting with Dr. Link as he needed to catch a plane to Chicago. This is the one bad thing about having Dr. Link as our oncologist. There are times (with no time bigger than this one) that we really need to talk to him, and it just can't happen sometimes.

Regardless, we have been put on a new 28 day re-induction schedule that involves slightly tweaked chemo, but not that much. The big change is two lumbar punctures per week, tripple LPs. The LPs continue until his spinal fluid is clear of blasts, then two extra LPs for good measure. The sooner the fluid is clear the better as these LPs are toxic and yuccy.

Speaking of spinal fluid, his LP last week showed 96 white cells and 42 blasts. The blasts should obviously be zero and white cells should be less than 10. Monday the white cells had decreased to 16, but the blasts increased to 87. The general concensus was this was good as we want an overall decrease. Hopefully we will improve rapidly now. Also, his bone marrow was clear, which was very good news. Spencer continues to feel good (besides being wiped out by the procedure) and shows no symptoms of a relapse.

Speaking of general consensus, it would appear that we are unavoidably heading for a transplant of some sort. It seemed to be a foregone conclusion at Stanford. Things could change but with the information we have right now our first choice is going with a cord blood transplant at Duke in North Carolina. We have a lot of research and talking to do now to further narrow down our choices, but we are proceeding as fast as possible with HLA typing for both bone marrow matches and cord blood matches.

So, while we used to be concerned with overall toxicity issues of a very aggressive chemotherapy protocol, we are now fighting a different battle where everything is on the table. And we have now had a knock on the door indicating just how aggressive T-Cell ALL is and that time is of the essence.

Finally, Spencer will be needing a lot of blood with a transplant, and the national blood supply is low. Please consider donating blood in Spencer's honor. And how amazing would it be to receive a phone call saying that you were a perfect bone marrow match for someone? Please consider adding yourself to the national bone marrow donor list.

More later. Thanks.

Monday, March 1, 2004 1:14 AM CST

kind of loud and triumphantly - "Friends of Spencer! Of Rocket! My brothers. I see in your eyes the same fear that would take the heart of me. A day may come when the courage of Men fails, when we forsake our buddy Sprocket and break all bonds of fellowship, but it is not this day. An hour of chemo and shattered needles when the Age of Men comes crashing down, BUT IT IS NOT THIS DAY! THIS DAY WE FIGHT! By all that you hold dear on this good earth, I bid you stand, Friends of the Spence!"

Or something motivating like that. And if you didn't see the movie, your loss.

We have arrived this evening up at Lisa's cottage in Woodside, standing on the precipice. Monday morning we go headlong into battle with this god-forsaken disease. We will do whatever it takes and we will not stop a moment before we beat it into oblivion once and for all. A battery of tests and pokes and draws and meetings are coming up and I'll have un update on what direction we will take soon.

Otherwise, we would just like to thank everyone for their thoughts and prayers over the last few days. Sitting around (well, we actually werent just sitting but you get the picture) waiting for Monday has been hard, with all the thoughts whirling around in your head. But the emails and guestbook posts have helped ease the anxiety. We'd like to give everyone big hugs and thanks in person but please accept one big cyberhug for now until we have time to get more personal.

Here we go. "FOR FRODOOOo...err...SPENCEEERRRRRRRR!!!!!!"

Dad, Mom, & Spencer

Friday, February 27, 2004 1:50 AM CST

Thursday afternoon at 3:30 we received a call from an oncologist at Stanford. The news was not good. Spencer had a lumbar puncture on Wendesday and the spinal fluid they removed and tested was not clear. There were enough leukemic cells in the spinal fluid to declare a central nervous system relapse.

We are going up on Sunday for a Monday morning bone marrow aspirate and another LP, and obviously a lot of consultation with Dr. Link, our oncologist. We are not going up until Monday because Spencer just had a full round of chemo on Wednesday including a double LP (methotrexate and arc). This should be a good thing regarding the relapse and he can't get more chemo that soon anyway. If there is any good news it is that his leukemic cell number was 42. I'm not sure what that is in relation to but it is a very low number. At the very least this means we caught it very early, and it gives us hope that his bone marrow may have a chance of being clear. All his blood counts including platelets are very good.

However, this much is certain - we are back to square one and then some. We know we will be getting intensive CNS treatment over the next couple weeks to target this area and we will have to go through induction therapy again. After that we will probably be put on a relapse consolidation protocol. And many more things may be on the table. And, things will get a lot tougher on Spencer. Our old protocol is out the window.

We are devastated, and worse yet, Spencer doesn't know what's about to hit him. Please send all the positive thoughts and prayers you can spare Spencer's way.

Thursday, February 26, 2004 2:04 AM CST

We are back home tonight, having successfully dodged the storm (what storm?) both on the way up and on the way back, although we did see one hell of a gnarly accident on the way back. Probably 8 fire engines, a helicopter, the works, with the northbound freeway closed and backed up for miles just south of Salinas. Luckily we were going the other way.

We got to the hospital late Tuesday afternoon to get a blood draw to see what his white count was, which would dictate if we went forward with the entire round. We had already been informed by our NP that no matter what, the radiation would proceed as planned on Monday. It was just too dangerous to risk any more delays, according to our oncologist. So, if his counts were high enough we'd go ahead, but if they were too low we would have to do a partial round, omitting the doxorubicin, which would mean making it up later, therefore adding a month to our consolodated chemo phase. We really weren't into that option.

So, his ANC needs to be at 750 or higher to go ahead with a round. His was at 660, but Dr. Link and our NP Stacey were willing to push things if necessary. I think this number was on the borderline but we went ahead with the full round anyway. Spencer also had a spinal tap scheduled for this round as well. He hadn't had one of those for a few months, and they are always kind of creepy. The entire appointment on Wednesday went pretty smoothly, except for one colossal meltdown when Spencer came down from the sedative for the spinal tap. The nurses called it, "an adverse reaction to the versed" (pronounced 'ver-said'). Now we have to mention that as an allergy anytime we go into the hospital again, which will be a lot.

What happened is, after Spencer being an absolute star during the spinal, he needed to lay flat for 1/2 hour. Towards the end of this time Spencer wanted to get up. We had to tell him he couldn't, that he needed to stay lying down for another 10 minutes. He decided he needed to get out of the bed. We had to say no. Spencer doesn't like it when you tell him not to do something, kind of like most people. This went downhill quite quickly, until he just lost it. He went on an award-winning screaming, kicking, yelling, and crying spree for the next hour. We had to hold both his arms and legs nearly the whole time so he wouldn't hurt himself, or hurl himself off the bed headfirst, which he tried to do several times. He repeatedly tried to yank his line out or rip it off the IV pole, causing the nurse to have to fix it a few times.

He was out of control and it reminded us of the induction phase when he was on his 21 day pulse of steroids. He'd do that daily. It really didn't matter what set him off, something would have because he was having a reaction to the drug. He told each of us that he hated us and to get out a bunch of times, including the nurses of course. Nothing could calm him down. They did give him an IV drip of atavan (sp?), another sedative. And after a full hour (I was watching the clock), he asked for some potato chips. That was a sign that maybe things were going to calm down. I gave him his Doritos (TM) and apple juice and within 5 minutes he was as sweet as could be, telling us how much he loved us, and even that he was sorry that he was yelling. Phew, glad that was over. Just part of the experience. For the next spinal we are going to have to figure something else out, which isn't for 18 weeks. He also got his L-aspariginase shots in his thighs while he was under sedation, so that minimized that pain. And the rest of the meds went fine.

So, by the numbers: L-asariginase shots - we've done 16 out of 20, 80% done, four more weeks, two of which we think will be done under anesthesia during radiation. We have 3 more large chemo rounds that include doxorubicin, so 9 weeks (maybe 10-11 if we're delayed) left in consolodation chemo. After that we transfer into continuation chemo, aka maintenance, aka LTM (long-term maintenance), which lasts the remainder of the 104 weeks of chemo (without delays factored in) since diagnosis, about 1 1/2 years.

So it appears that we are making progress as we are finally starting to see some of our countdown numbers getting pretty small. However, it is bittersweet because even though we are excited to end the more intense part of chemotherapy, it is tempered by the shear intimidating length of maintenance. And since we are on an aggressive protocol for an aggressive form of leukemia we have IV drugs every week throughout this stage. It's not like we'll get our former lives back by any stretch of the imagination. It "should" get easier though, from what we've heard.

But first things first, we've got a huge hurdle to jump over the next two weeks. We're right back up there Sunday night for a 7 AM visit to the hospital for the start of cranial radiation. This is perhaps the biggest part of the therapy, save for getting the stuff in remission in the first place. We'll go in at 7 AM for 8 days straight (not including weekends), as long as his counts stay good. If they don't stay good I don't know what sort of delays we could encounter. And we really don't know what to expect this time because we've never gone into a round with Spencer's ANC so low. Usually he's at 2500, maybe even 3500. Now we're at 660 and crossing out fingers.

See you next week. Dad's going to check out the giant surf tomorrow.

Monday, February 23, 2004 2:26 AM CST

Spencer is just doing really great right now. He's happy and sweet, and wants to play all day long. And he's really into learning new stuff, doing puzzles, learning the alphabet, counting, doing things all by himself. He's great. His appetite is good and he's eating good food while he's at it. He has no taste for candy and chocolate and sugary stuff. He definitely did not get that from Dad.

He successfully recited the entire alphabet on Saturday, effortlessly, with no mistakes. He doesn't know what all the fuss is about. He can even recognize words now. His new big word is 'Accoutrements'. I don't think he really knows what it means but he likes to say it, along with 'bug-car-deedledee'. Thats our new favorite saying. If you're happy, say 'bug-car-deedledee'. And on Sunday he mastered, and I mean mastered, by far the most difficult wood puzzle he has attempted yet. It's for 4 to 7 year olds and he's wired it in one day. It's all these random shaped, non-interlocking pieces with planets and writing all over them with no guide whatsoever as to how they might go together. And he does it. I believe his memory is so amazing that he remembers what portion of the puzzle the piece came from when he saw it there the first time. He litterally can take a piece and put it down in the center of the puzzle frame, with no other pieces around, and yes, it goes there. He has a photo of it in his head or something. Mom just couldn't believe it. Sorry, but with all we're going through it's nice to brag about him sometimes. No pain in that.

Gramma Betty was here last night and this morning and he enjoyed that. Mommy and Gramma are teaching him to enjoy footrubs, much to Daddy's dismay. He sounds like Mommy now - 'I need a foot rub...with lotion'. Grrrr. And Spencer is really enjoying some time with his newest friend - Jessica. Jessica is a Cal Poly student in the teaching program that we hired to spend a couple days a week with Spencer in order to keep him stimulated before and after radiation. We are certain that keeping his brain spinning will be a good thing as we bombard it with Stanford's linear accellerator.

Well we're headed up on Tuesday, back on Wednesday. We'll probably know our exact radiation schedule by then.

Mom, Dad, & Spencer

Friday, February 20, 2004 1:29 AM CST

Spencer has been enjoying (and so have his parents) two whole days off without medicine. That ends Friday morning when he starts up with his normal three days of Septra, which is a preventative oral medicine for pneumonia. We did have our clinic appointment at Stanford on Wednesday and it went sort of okay. The big deal was how well Spencer handled his shots. He was the bravest boy we have ever seen. He managed what I would call some loud whimpering but he did not cry or scream loudly. And when the shots went in he did not show any change in attitude. We were all very proud of him. And he was proud of himself.

The not so great part of the appointment was in getting the blood draw. Once the nurse accessed his port she couldn't get any blood return. Nothing. Nada. But it did flush fine. We tried all sorts of positions. The nurse moved the needle around a bunch. We ran around the day hosptal for a while. All in hopes of getting a blood return. Nada. We were discussing either just bailing and doing it with a finger poke, or pulling the needle completely and trying again. But the nurses suspected the line was clotted off and decided to try some special unclotting juice in there (I forget the name).

We didn't try for the blood draw until over an hour after we got there. We tried all sorts of things for an hour afterwards. Then after they put in the unclotting juice we had to wait another hour for it to do its thing. Frankly I didn't think it was going to work, but voila, instant blood once the nurse tried again. Thank goodness the nurses were persitent and tried that. We wouldn't have wanted to go home for another week with that thing clotted off. Poor Spencer thought he had run out of blood for a while. So, a 1 1/2 hour appointment took over 4, mostly for the part that usually takes 5 minutes. Oh well, it's all good as long as things end well, which they did.

So we're back in Cambria doing our thing. Spencer was excited to deliver a belated Valentine card to the Cambria Fire Department but he fell asleep in the car on the way there. Dad hung out with Spencer in the car until he woke up about 6 PM and then headed over there. Unfortunately Spencer was cold and wasn't fully awake from his nap so he wasn't his normal animated self. But he did hand deliver his Valentine to Captain Mike, who has Spencer's photo up on his office wall. Thanks to all those guys for being so great to Spencer. He wasn't too with it then but this evening he's already chatting about the rubber rescue boats he saw in the fire station.

Now we are planing for another Wednesday appointment for a full chemo round, including a spinal tap before radiation starts on the following Monday. However, the trend that we are seeing in his blood counts suggests a delay may be in the cards. If so we will still go on Wednesday for the shots, and if he is delayed we'll make a decision about how to deal with it at that time. For now we are all enjoying a mostly healthy and happy Spencer. Thanks for checking in.

Mom, Dad, & Spencer

Tuesday, February 17, 2004 0:37 AM CST

I haven't posted an update on Spencer's fever situation for a couple days because we wanted to make sure about the direction things were headed. Now, with a reasonable degree of certainty, his fever is gone. Looks like we dodged one. On Saturday his fever had gone down from the 101.4 that we had in the clinic on Friday afternoon but still ran above normal all day. Sunday seemed to be a full day of close to normal. And today, Monday, he has been normal all day and night. Both Mom and Dad felt a little odd physically at times over the past couple days too so maybe it was a viral infection or something. Let's just put this one behind us now. Thanks for all the encouraging words about this.

This afternoon Spencer really seemed to hit his stride. His appetite has finally returned to normal and he was pretty much bouncing off the walls all afternoon and evening. A little intense at times but overall a very happy dude. Seems like it's been a long time. Problem is that all this fever/chemo/infection/predinsone/nausea/tiredness that Spencer has been going through off and on over the past five or so weeks has really worn us out. Now that he's back to full speed, he's really wearing us out. We can't run and we can't hide. Come back Gramma Betty!

Mommy and Spencer are heading off for an early 8:10 AM dentist appointment in the morning. That should be a treat, getting everybody up and out of the house on time. It'll be practice for radiation when we have to be at the hospital at 7AM every morning for 8 days. This will be Spencer's first visit to the dentist since diagnosis. And taking care of your teeth is just another one of those critically important daily tasks that becomes magnified 100 times during chemotherapy and radiation. Just going to the dentist's office is not as simple anymore either. The office has to schedule a patient like Spencer to be the first patient of the day, for several reasons. They have to prepare a bit different and modify a few things, plus Spencer has to take 18 ml of antibiotics one hour before the appointment to boost his ability to fight any potential infections that could result from the teeth cleaning procedure.

So it'll be a full day for everybody as Tuesday afternoon we head back to Stanford for a couple more L-aspariginase shots during a Wednesday afternoon appointment. Then it's back home Wednesday night. So in theory, our routine quick-hitting trip up and back. Routine except for the giant needles Spencer gets to have jabbed deep into each thigh. Oh to be three and not have to stress about the anticipation. This will be 15 down, 5 to go. Getting there, but who's counting, right?

Saturday, February 14, 2004 3:42 AM CST

"As the Fever Turns" episode 2

So we stayed up in the Stanford area Thursday night partly because we were paranoid of Spencer's fever being a return of his staph infection and partly because of superstition, I suppose. Surely if we de-accessed his port and drove home we'd get a phone call in the morning saying we've got to get our butts to a hosiptal. And naturally if we stayed nearby with Spencer's port accessed, all ready for anything, then things would come back negative. Well, it kind of worked, and kind of not.

As of 24 hours from initially taking the culture the results were negative. It is a 48 hour window, however. That was good news but Spencer still had a fever all day. It was pretty low early in the morning but came up gradually all day back to fairly nerve-racking levels. When it was finally time to make a decision on heading home we figured we'd go by the hospital and have them de-access Spencer and have them take his temperature themselves, just to emphasize the point.

We did that and his temperature was 101.1, which certainly raised the nurse's eyebrows. But, since the culture was negative so far, and Spencer is not neutropeanic, our main NP told us to just go home and not worry about it. Yeah right! What? Us, worry?

I guess if the culture is negative then it is not a bacterial infection (so far) which they would be most concerned with. So it would most likely be a viral infection (even though Spencer has zero other symptoms of being sick) and his body should be able to fight it off since his white blood count is good. Otherwise we have no explanation for the fever.

So, frustration is the operative word. The very last thing we want is to be admitted to the hospital, but a little more guidance or reassurance from the hospital would be nice. Now we drove 3 1/2 hours home with a 3 year old kid on intense chemotherapy with an unexplained fever. And he's been 101 or so for three days straight, which is a fever even by Stanford's standards. Either Stanford is going to call tomorrow sometime and tell us we do have a line infection, in which case there is going to be some serious grumbling, or we are going to have to hope like heck Spencer can kick this thing himself, never having known what caused it. That would actually be the preferred scenario, but we're just driving without headlights for now. It's a wonderful feeling.

Just before Spencer went to sleep his fever was down a bit from what we saw in the hosptal. Hope it keeps going that way.

Oh, yeah, and it's Valentine's Day. Spencer would like to say happy Valentine's Day to everyone. And so would Mom and Dad.

Friday, February 13, 2004 2:10 AM CST

Oh boy.. here we go again. Can't things go smoothly for an entire 24 hours? We arrived at our clinic appointment on Thursday...maybe a little late...okay, a lot late, but it was not a problem and we knew that. Sometimes arriving late in the day avoids the rush in the clinic. The appointment itself went as smoothly as possible. The day hospital even had his meds ready before we were there. It was bing, bang, boom, shots were in, wait an hour, and we were out of there. However, we did notice that Spencer's temperature was a tinsy bit elevated when they were doing vitals. It was a bit over 99.

That night we checked into an absolutely hideous hotel. The one we normally stay at was full and we decided to go with something different (on the housing departments recommendation) over Ricky's Hyatt which we stayed at a lot in the beginning and is relatively far away. Big mistake. Anyway, Spencer spiked a pretty good fever that night, up to maybe a bit over 101. We called the hospital and then kept a close eye on him overnight. The fever went back down but not all the way. Seems his low-grade fever is back.

The hospital wasn't too concerned with the fever as far as continuing with our radiation appointment and anesthesia was concerned. But we did stop in the clinic to draw blood for a new culture first. Our radiation appointment was at 1PM so our appointment with admitting and the day surgery place for anesthesia was at 11:30. Of course they weren't ready to take us for the procedure until well after 2pm. So, nothing to eat or drink before surgery + kid just off prednisone + very late appointment = big big problem.

At one point we thought he was going to bust a lung screaming so loudly. For that one he was in the hall just outside the day surgery check-in window. We figured that'd get the point across better than asking what the heck was taking so long. It was a monumental struggle but for the most part Spencer kept it together. We finally got things going and apparently the mask-making went very well. We collected Spencer and headed out of the hospital for some food about 4:30. First meal of the day for all of us.

Now, for the problem at hand. We were supposed to go home, but because of the fever we not only stayed in the area (at Ricky's Hyatt of course) but we also left Spencer's port accessed. Call us superstitious. So we should find out something about the culture in the morning. If it's positive then his line infection is probably back and we may have to get admitted. If it's negative then we'll go home but we won't have any answers about the fever, unless it goes away. It was up again this evening to over 100 but is going back down again. Stay tuned for another episode of "As the Fever Turns"

Monday, February 9, 2004 1:22 AM CST

It's four days since Spencer's last chemo round and about the time you start to ask yourself, "how much can you ask of a kid?" Monday morning will be his last dose of predinsone, which is three times a day with 10ml of foul tasting goop for five days. Friday, Saturday, and Sunday are also septra days, which is twice a day of 5.5ml of foul tasting pink gunk. He also gets 6mp at night, another syringe full of pink stink. And when his tummy is feeling bad because of the prednisone we try to give him a dose of zantac to make him feel better. Today, Sunday, he got 7 doses of medicine, totalling 8 syringes full and a couple spoonfulls of yoghurt with half a pill burried inside. One day I'll do the math and total his medicine doses througout two years of treatment.

As Spencer feels more and more lousy with each day after chemo, each dose of medine becomes harder and harder to get in him, until, like tonight, you spend the whole evening trying to get it down him. Once he takes his medicine, before you know it it's time for his next dose. And as parents, we know full well that giving him something like prednisone, while effective as part of his protocol, in the short-term is going to make him not feel well and whack out both his personality and his diet. Oh what a fun time with your kid.

Aside from spending all day trying to drug him, Spencer is feeling the effects of Wednesday's chemo. He is continuing to feel worse and worse. Last time he peaked about five days afterwords, which for this round will be tomorrow. While he is low energy, clingy, and not eating very much, he is still not feeling as bad as he did after the previous round. We're hoping he's bottoming out and wont get any worse. Medicine will be over in the morning (except the 6mp, which isn't bad) so hopefully Spencer will start rebounding soon. He may have had chemo on Wednesday but it's really 7 to 10 days of solid no-fun for everybody, especially Spencer.

We did take Spencer to the beach today. It was nice but he didn't want to play so we stuck him in the backpack and hiked out to San Simeon point. We found a few trees jam-packed with monarch butterflies, which Spencer seemed to enjoy. He even got to hold one in his hand and let it fly away. Pretty magical. Then on the way home he nearly recited the entire alphabet, much to our astonishment. He easily can go "abcdefghi" and then usually gets lost. But this time he went "abcdefghij", got jumbly until m, then said "mnopqrstuvwxyz" perfectly. Wow. Unfortunately he only does that kind of stuff on his own terms and probably wont do it for us again for a while. We didn't know he knew the second half at all, but he's got it all inside.

We'll head to Stanford early Wednesday for L-aspariginase shots, then a radiation mask-making appointment on Thursday. And there's a few new photos in the album too. And special thanks to Isidro Arce for calling tonight to check in from Punta Abreojos, Baja California. We hope to all head down there after this is all over to say hi. Thanks for stopping in.

Thursday, February 5, 2004 4:01 AM CST

We finally got home from our week-long trip to the Stanford area to treat Spencer's line infection. He continues to do well as far as that is concerned so hopefully he has whooped it. We had a rather late clinic appointment on Wednesday for Spencer's next chemo round. Problem with the late appointments for his larger rounds is they take a long time and we don't get to head home until late. We got back to Cambria at 1AM.

But the appointment went fairly smoothly. Spencer's port was already accessed because of the antibiotics we had been giving him all week, so there was no poke there. And the L-aspariginase shots went normally - happy..screaming (actually cussing a couple times this time to our embarrassment)...then happy again all in about 2 minutes. And the other IV chemo went fine so we got out of the hospital about 6:30ish. Then we had to go eat and clean while we took in American Idol and all that stuff before we headed home. That show is hard to watch, but it's entertaining. Good thing we don't have cable at home.

Unfortunately it was not a real happy departure. We had hoped since we were done with the infection and back on track with the chemo that things would get back into more of a rhythm, like it was a couple months ago. Now it appears Spencer is fighting a runny nose and is a little out-of-sorts. And Mom has decided she is definitely getting sick. Perhaps something we could have picked up in the hospital? So now we get to worry and stress some more, as if we didn't do that enough already. Hopefully everybody will fight this off. Spencer's ANC count is quite high, which is typical after an infection, so he may be in good shape to fight off some bug. But he better do it this week as his counts will drop next week.

If everything stays on track our radiation is now rescheduled to March 1, which coincidentally is the date that the radiation department at Stanford thinks it is moving into its new facility. That may be a pipe dream to think they could move on time, but they have reassured us everything will go smoothly for the patients. The old place is very depressing - in the deep dark basement of the old hospital. And the new place is in a brand spanking new building with new machines and everything. They were washing the windows this week, getting ready to open. It'd be nice to be in the new place, but it'd be reassuring if it were up and running smoothly first. But we'll take it day by day for now.

Thanks for reading. Spencer says hi.

Sunday, February 1, 2004 1:27 AM CST

Yes, we met with the parole board and they granted us our release. Apparenty Spencer's blood cultures are still negative and things look good to go. And Spencer has not had any low-grade fevers for a few days. We did have a bit of a fiasco today, though. Spencer's access line broke this morning, spilling IV fluid all over the place. Evidently the plastic tube cracked somewhere. The nurses said this is phenomenally rare. Only one of the nurses had ever seen it before and when that did happen it prompted a personal visit from the line manufacturer. Whatever. And it's pretty rare to get leukemia too. We don't pay attention to the odds anymore.

So they had to take the needle out of the port. But we are still on IV antibiotics so Spencer needed to get re-accessed for his 2 PM dose, and so we could adminster the rest of it when we're out. Spencer's poor nurse took such a liking to Spencer during the morning that she really didn't want to upset him later by poking his port, which she had heard could be traumatic to the little guy. She bonded with Spencer by running up and down the hall with him, and even taking him downstairs to see the train. It was a very mellow day when the nurses could play with the patients. Spencer probably ran up and down that hall probably 100 times during the day, sometimes squealing with happiness. The nurses could not believe a kid on chemo could have that much energy. Believe it.

So finally we got Spencer ready to be accessed. I told the nurse (Jennifer) not to worry, Spencer would be a good boy and, even though he may cry a bit, he would recover in about 5 seconds. And she would still be her friend. But I said it would really help if it went quickly and worked right away. Maybe I shouldn't have said that.

She accessed the port and everything seemed to be fine. She and Sam put a nice dressing on it, fully held down for some serious playtime over the next couple days. Then, right when we were about ready to hook up the IV pole the thing wouldn't flush. Nothing would go in. To make a long story short we had to remove the dressing, mess around, troubleshoot, etc. Nothing worked. We had to remove the needle and re-access him, which went smoothly. So, the quick, smooth, first time port access turned into 1 1/2 hours of Spencer torture. Whoops. The good news is the port is working great now and we're confident we wont have problems over the next three days. And Spencer handled the whole thing really well, amazingly well. He hardly cried at all. Maybe he is getting used to the port. And Jennifer is still Spencer's friend. She did everything right. It was just something funny going on. Our 2 PM IV infusion turned into finally getting out of the hospital at 6:30 PM. But we are out and everyone is happy. Spencer is still bouncing off the walls (Okay, he finally went to sleep. How do you think I have time to write this? But he went until 11.)

We are now at Lisa's cottage ready for the Superbowl (as if Mom or Spencer will let Dad watch it). We have decided to stay in the area until our antibiotics are done and until our chemo round, which should be Wednesday. We figure the port access is a bit tricky, and the antibiotics need to go smoothly, so staying here allows us to deal with any situations better, and to be able to concentrate on the antibiotics. We don't want that staph infection to come back.

Hope everybody has a great rest of the weekend. And as far as the Superbowl is concerned..."GO..." ...now who is playing again?

Saturday, January 31, 2004 4:11 AM CST

Spencer had another pretty good day on Friday. He was not in quite as good of spirits as on Thursday, however. He wasn't as into the play area as normal, with a shorter attention span for everything, but he still had fun most of the day.

The update on his infection (line infection presumably) is pretty good. His last culture was negative after 24 hours. So the first was postive, second was negative, and if the 3rd one is negative in the morning there is a good chance we will be sent home. He is not neutropeanic, so that is not a problem. I suppose the two issues are - the third culture being negative, and what is the second culture doing after 48 hours? We'll see in the morning.

Spencer is only getting vancomicin for antibiotics now and he will have to continue with it through Tuesday. That means that if we get kicked out before that we will have to administer the IV ourselves. This involves leaving his port accessed with the needle and line until we're through. And we get these little pre-pressurized balls that are full of medicine. You hook them to the line and they automatically infuse the dose over the proper amount of time. Bummer is he gets vancomicin 3 times a day (every 8 hours) and the infusion time is 2 hours each. So we'll have to hang these balls off him for 6 hours per day. Shouldn't be that big a deal.

The potty thing took another leap forward today, thanks to our roommate Arline. She is a very cool, very outgoing 5 year old girl. She came over to Spencer's bed the other evening and asked if he would come over and play on her bed. They spent more than an hour drawing and building blocks and stuff on the meal tray thingy. It was the cutest thing ever. But I'm not sure what Arline's mom thought about it. Arline was chatting up a storm in Spanish the whole time, saying stuff like, "oh, I have leukemia, what does he have?", very matter-of-fact like it's no big deal. She is very verbally advanced and one of the most outgoing girls I have ever seen, and not in a precocious sort of way either. Just very nice. She's always peeking around her curtain to say hi, shine her flashlight at us, or just flash her big smile.

Anyway, tonight she and her Mom cruised by Spencer's bed on the way to the bathroom. Since the play session Spencer is always interested in what she is doing and now he wanted to know what she was doing in the potty. After they got out Spencer decided to go in there and see if he could be a big kid too, and he didn't want any help. He told us both to leave if we tried to check on him. Well, it took a while but he not only went poopy on the potty all by himself but even wiped his bum, all before he would let us back in. And he did a good job of it too. We could not have been more impressed. (I'm sure he's going to want to ring my neck if he ever reads these journal entries when he's older...sorry Spencer, you're a big boy now so I won't write about it anymore.)

So sometimes it's nice to have a roommate.

Thursday, January 29, 2004 3:04 PM CST

We are just hanging out in the hospital, playing like feinds. Spencer goes to the play room every time it is open, which was a total of 5 1/2 hours on Wednesday. They had carnival during the evening session and Spencer had a great time. He won chips by throwing rope rings on pegs, sinking dosage cups with syringes, throwing frisbees, throwing balls through holes etc. He cashed his chips in for a new nerf basketball with hoop that hangs on the door.

He is still having slightly elevated fevers once in a while but he is in high spirits and is really a handfull when he gets going, running around, bouncing off the walls, and dragging the IV pole behind him (well, Dad is chasing with the IV pole behind him). Call it extreme babysitting. Yesterday he was playing with the play vacuum in the play area and decided to vacuum under the play table. He ended going all the way under the table and coming up on the other side, IV pole and Spencer on opposite sides. That was a little tense but we convinced him that he missed some spots and he went back under. They also dyed some more rice for the rice/sand box. When he tried to smell the rice he got some kernels up his nose that continued to work their way back out into the evening hours.

Our situation is thus - Stanford was able to grow some positive cultures with his first blood sample. He is on a couple antibiotics but will probably continue with his vancomycin as the one that seems to be working against his particular bug. They will take a blood culture every 24 hours, which also takes about 24 hours to get results on. We will be able to be released when two blood cultures in a row come back negative. So, best case scenario, which is unlikely, we could get out Saturday. It would make sense that it'll take a bit longer than this but if things go well we will get our Chemo round on Wednesday, getting out of the hospital sometime before that. But that pesky staph has to cooperate first.

Meanwhile, we'll be playing. Thanks for checking on Spencer and please sign his guestbook.

Wednesday, January 28, 2004 5:07 AM CST

Greetings...from the emergency room at Stanford Medical Center, such a lovely place to be. Actually, we're not in the ER anymore, we just had to stop by here first before we got admitted up to 3 South at Lucille Packard. And yes, it is 3 in the morning, but don't panic, thinks are okay, we think.

We were just packing up for our clinic appointment on Wednesday when our pediatrician's office called. Apparently Sierra Vista hospital called them and said something was growing in Spencer's blood culture they took on Tuesday. Some type of Staph. Well, Stanford doesn't mess around with that stuff. They said we were going to be admitted, and admitted now. Problem was no one had room. Sierra Vista was full (not that that was where we wanted to go) and so was Stanford. Hmmm, what to do? We told our NP we were headed up. She was trying to get a room and thought one would for sure be available by Wednesday morning. But we needed to come immediately so we would have to go to the ER, and possibly hang out there for a long long time.

Fortunately half way up they called and said a room was open. Since 2 North, the normal oncology unit, was full, we are in 3 South, kind of an oncology overflow of sorts. One thing that you notice is that it's a lot quieter in here, with less poeple cruising around and carpeted hallways. And it's right next to the play area.

So the first order of business was to access Spencer's port to do a cbc and start another culture up here. Unfortunately that didn't go very smoothly, much to sleeping Spencer's dismay. The nurses accessed the port but nothing would come out for the longest time. I think the whole ward was awake after a bit (our poor roommate, and we haven't even met him yet). After a good 20 minutes of stressing they went to fetch a nurse from 2 North to troubleshoot the thing. Of course shortly after that the port started to deliver, and we got the draw. Sheesh, doens't anything go smoothly?

So, bottom line is Spencer may have some staph infection of some sort. If so, it is probably what has been causing his low-grade fevers over the past 3 weeks. He will get two types of antibiotics immediately. And when they figure out the culture they'll adjust as necessary. Scenarios range from - nothing grows and we get out in 48 hours, to having to stay inpatient through an entire antibiotic round (7 - 10 days), assuming the antibiotics are working. It just depends on what they find. They'll know more in probably about 24 hours, but the doctor thought it might be a slow, not so aggressive form of staph that isn't too bad, but that's speculative. Regardless, our chemo round is now delayed until further notice, as well as our radiation. We'll have to wait and see when things start up again.

Spencer, aside from his port access, was in great spirits all day, playing hard with Daddy, Mommy, and Aunti Patty, who saved our butts by being there to play with Spencer when we had to pack up. You would never have guessed we would be in the hospital right now. We're just glad we finally got them to do a blood culture though, after over a week of trying. We hope it resolves this fever thing. If Spencer is feeling good and as active in the hospital as he was at home the past couple days we could have our hands full around here. It's tough to run up and down the halls attached to an IV pole. He already said he'd like to go home. Hopefully this is a small bump in the road. Wish us luck. Good night!...err...morning.

Tuesday, January 27, 2004 1:27 AM CST

Just another stressful day in cancertown. But the type and level of stress that goes with this stuff is several orders of magnitude more intense than what we ever thought possible. After a couple fever-free days Spencer's low-grade fever came back. And to really scare the wits out of us he has occasionally voluntarily complained of headache, neck ache, and back ache, although not all at once. Just not the type of stuff we want to hear.

Spencer's next chemo round is scheduled for Wednesday but we have been concerned that his counts may not rebound in time. So do we just drive 3+ hours to Stanford and check his cbc there? And risk going home for another week if he his neutropeanic? Or do we get a blood draw locally at Sierra Vista Hospital Monday or Tuesday. Monday would mean possibly accessing his port twice in three days. Tuesday we could probably leave him accessed should we have to go to Stanford. Since we had just had it with the fever stuff we opted to get the blood draw asap, Monday. And we called Stanford to get blood cultures done as well in case there is an infection in his line, which could cause the fever.

So that set in motion a frustrating day of trying to get the draw. We finally got all the orders for the hospital but then the hospital called and said they had patients with infectious diseases in there so we had to wait until they could find a place for us. They finally did and we were clear to go. Of course it was Monday so the business was busy. We finally got to he hospital at 4:15, a half hour later we were ready to go only to wait in the mother/baby room for another 1 1/2 hours until they finally did the draw. The reason for the delay is still a mystery. Spencer had absolutely had it in that little room by then and we only barely pulled it off.

We had to be home before 7 PM to meet with the Make a Wish guys, but we had to go to the bank, we had NO food in the house, and we hadn't eaten since morning. We had to bail on all those errands and more because things had taken so long, and we were all experiencing low blood sugar. We were all about to blow. Just a really fun afternoon.

We finally got home, Dad blasted to the market and got some takeout food, Spencer ate like a horse, finally, and after a good meeting Mom and Dad got to eat by about 9PM. Day over...oh, except that the dang hosptal still hadn't faxed the lab results...more phone calls. Results are in - Spencer's counts are holding steady at just above the neutropeanic threshold, which means we are a go for Stanford on Wednesday. And the fever is gone for the moment (was gone by the time we got to the hospital of course), Spencer is happy and pain-free as well. Let's go to Stanford and get some more of that Chemo!

Wednesday, January 21, 2004 2:47 AM CST

We think Spencer has finally kicked his low-grade fever that has pestered him and driven us crazy for the past two weeks. It's just the first afternoon and evening but we hope it stays away. It is very unnerving. In concert with that it seems Spencer was pretty much 100% today. We played outside at Lisa's cottage nearly all day today. We threw tennis balls with those floppy plastic handles designed for throwing balls to dogs. We kicked the soccer ball forever. We played basketball. We played golf. We rode skateboards and scooters. We jumped on the trampoline. We toured the garden and squirted the hose. We explored the construction site. What am I forgetting? Oh, we raked the rocks some more. We saw a banana slug. We ran and tickled (our version of tag). We played on the playset. We did a lot.

And, two giant milestones were reached over the past two days as well. So much yuckie stuff is going on that we can possibly miss big moments that a little kid should be proud of. Then, when they happen you greet them with both happiness and sadness. On Monday night Spencer went poopy in the potty all by himself for the very first time. And if any of you know the constipation issues that have plagued Spencer for at least the last 18 months you know what a big deal this was. Not that he's potty trained by any stretch, but...wow. Second, he jumped on one of Lisa's kid's bikes today and pedaled it across the driveway a couple times (with training wheels and with Mommy or Daddy spotting him). Spencer has never really shown much interest in riding a bike (other than in the bike seat or trailer while Daddy does the work) and he hasn't used his tricycle at home much, so this came as rather a surprise. As usual he took to it like he'd been doing it for months. And, as usual, he only lasted a couple minutes.

That's the kind of stubbornness that Spencer has - you try to teach him something like that and he'll shut down and want to do something else. But he learns it while he pretends to not be interested. Then when you least expect it he'll hop on and go, no instruction required.

Otherwise, Spencer had his neuro-psych evaluation on Monday. Debbie had a very long and fun directed type play session with him. And Jeanne then played with Spencer while Debbie told us about Spencer and our likely issues with treatment. It was kind of like a parent-teacher conference. And it was kind of weird because we've never done something like that before...talk about your kid's develpment. As we suspected - he's a genius...no, just kidding, but he is very bright, curious, observant, and (yawn) energetic. And he is relatively advanced in many aspects, particularly speech, which should come as no surprise for those of you who have talked to Spencer. And yas knows he don't git that from his Daddy. The more developed he is the more it should help him through some things like the radiation and such. At least that's the theory, and we sure hope it's true. Then there's the possible effects of treatment, and there are a lot of them. But that's yuckie and I'm not really going to go there. Some of them will probably manifest themselves in some way, but some won't so it's counterproductive to speculate. We are hoping for the best.

The good news is we now have a baseline. If anything pops up we should be able to catch it early and take some corrective steps to minimize things. You never would wish this on your worst enemy but the good news is he'll get a lot of attention and help if he needs it. But then again, you know what happened with the bicycle thing.

We're off to Clinic D on Wednesday afternoon for a couple more of those lame shots, then home. Spencer is excited because Auti 'Chelle is coming to see him again at the hospital. And Matt Hume is inpatient so he can go play with Matt's trains afterwards.

Thanks for tuning in, and carry on.

Friday, January 16, 2004 2:10 AM CST

We just got back from a couple days up at Stanford - a clinic appointment on Wendesday and a pre-radiation appointment on Thursday. Spencer did really well and continues to improve in health and spirits since his general poopedoutedness from his last round. We even played soccer a couple times at Lisa's house. He's pretty good at kicking the ball. Who knew? He's just about back to his normal self save for a persistent cough that now seems to be transitioning into some chemo-induced (methotrexate?) hack that won't go away.

On Wednesday we just had the L-asparaginase shots in the clinic (day hospital to be exact). These continue to be highly traumatic for Spencer but he also keeps rebounding quickly right afterwards. We always be sure to break out some prize to cheer him up and it works. No problems after that. This was number 11 out of 20, so we're over the hump and are slowly starting downhill.

Then on Thursday we had what was supposed to be the standard radiation consult and scheduling with Dr. Donaldson. But, of course it wasn't totally standard given our meddling. Apparently our reputation preceedes us. After a significant and tense delay we had a good meeting with Dr Link, our oncologist, Dr Donaldson, and the resident. We had some very frank discussion about the opinions Dr. Link obtained after making calls all over the country and the world about our radiation issues. Some heavy stuff, that Spencer lightened by bonking Dr. Donaldson in the noggin with one of his squeeze rockets. Spencer apparently wasn't fazed by the meeting and went right on playing and jabbering. Dad and Spencer eventually had to go outside to throw pennies in the fountain, and play in the play area.

Evidently the feedback from the three oncologists was as such: Dr Sallin from Dana Farber said Spencer was the last kid on God's green earth that he would withhold radiation from, but that 1200gy was justified given the preliminary results of this dose. The head of the BFM, or German protocol said he would definitley go with 1200 gy, as his institution has been for several years. And Dr. Pui from St Jude said he would not radiate at all, but instead add additional CNS directed treatment (St. Jude doesn't use radiation on T-Cell). However, Dr. Link was clearly uncomfortable with this and felt it was kind of out in left field. I think he was hoping we wouldn't latch onto it and try for no radiation at all. That was never going to happen (note- Dr. Pui won a nobel prize for T-Cell research). And finally (and most importantly) Dr. Link was comfortable going ahead with the 1200gy. End result is everything went well and we are on track for radiation starting Feb. 18, a total dose of 1200gy as hoped. The doctors have been so great listening and reacting to our concerns. We are really happy that we are at Stanford, with the best doctors they have.

Now we're back for just three days before heading back up to Lisa's on Sunday night. Spencer has a neuro-psych evaluation on Monday to establish a base-line so we can track his progress after treatment. And we'll be up there through our next clinic appointment on Wednesday. Things are moving fast.

See ya.

Wednesday, January 14, 2004 0:40 AM CST

Wow, what a crazy day. Things were good, things were very good. Things were bad, things were very bad. I think this post could get a little long if I do much explaining, but you might learn what we've been going through the past few months.

First, Spencer woke up with a start at about 6:15 and demanded his bean dip. We thought that was a good sign that he had some renewed energy. Unfortunately that was short-lived. He pooped out by 7:30. Slept until 8:30. Moped around all morning, complaining of being hot, being cold, knees hurting etc. Then he did develop a low-grade fever. Then he ended up not being able to walk at all. He'd go two steps, buckle, and sit down trembling. It's the most pathetic sight you ever hope not to see. It kills you. Finally, he started moaning in pain. Could it get worse? We called the hospital twice and very nearly just jumped in the car and took off. It was bad.

Finally, about 2 PM we gave him some tylenol/codine. We were a bit fearful this would mask his fever but it had to be done. Within 20 minutes he flipped a switch and our little Spencer Rocket was back. Jibber jabbering all over the place. "Look!, I can walk!" Silly dude. I can't explain it but it seemed he was instantly better, a lot better. Gramma Kristie and Grampa Ernie came by for a little bit and he thought that was great. When we finally left for the hospital he was going 100 miles per hour, talking about I don't know what. Driving Mommy crazy. We were wishing for our little dude back, and we got him. He's not 100% but hopefully he will continue to improve.

Our NP said this round shouldn't hit him this hard so we suspect he is fighting off some sort of bug or something. It can't easily be explained.

So, on to the good news. If you've been keeping up you know we had a big meeting with our oncologist regarding radiation last week. End result was he was going to consult three other big-wigs about the radiation dose. During Kerri's first phone call to the hospital our NP Stacey informed us that all three doctors got back to Dr Link with a unanimous decision that the lower dose of 12 gy radiation is what we should proceed with in Spencer's case.

This is huge. This is so huge I can't type big enough to explain quite how huge it is. We've been agonizing about this for months and our wish has come true, with a unanimous decision by three of the top T-Cell experts in the world. Unbelievable. It would have been more enjoyable if Spencer wasn't worrying us sick with his condition.

A little background: The "cure" rate (and I put an asterix by cure because not only can relapses occur years later, but it comes at a price with many possible side-effects from treatment, some serious and permanent) for childhood leukemia has gone way up over the past 20 years, largely due to improved chemo drug combinations and radiation. With Spencer's type of leukemia - T-Cell ALL, a generally more aggressive leukemia with a worse outcome overall, recent studies have shown remarkable improvement with two big guns - high dose methotrexate (HDM) and cranial radiation. Some studies have been sobering. One Italian study showed EFS (event-free survival) rates of 80 to 89% using radiation and down to 17% without. Yikes. Of course the studies have to be analized for their accuracy and may not apply everywhere, but still. It has become clear in the past 10 years or less that T-Cell kids would be advised to do cranial radiation, particularly those with high presenting white blood cell counts, like Spencer.

Problems arise because there are a few different protocols that a kid could be put on for T-Cell, usually depending upon what hospital they go to. Some protocols don't include radiation. Some don't have HDM. Some have one or the other. Some have both (like ours). And historically T-Cell kids were lumped in with the more common B-Cell kids, usually ending up on the higher-risk B-Cell protocols by default. Some protocols now are T-Cell specific. And if you're put on a protocol, tinkering with it at all is risky. Years of study have gone into each protocol, with exacting combinations of drugs and timing. To react without a study can be problematic. And studies have to be compatible with your protocol. To draw conclusions about a study regarding radiation or HDM, but with kids on a different protocol than what your are on, may be of limited value. And new studies take years to complete. Concerns about both over and under treatment pop up. And if you relapse on T-Cell, your EFS rate plumets to not much over 10%. You get it the first time.

But, you also want a kid that is still a kid at the end of it all. Back in the day cranial radiation was done at 2400 gy. This dose had very quantifiable long-term side-effects, usually affecting spacial reasoning, mathematics, memory, reading, etc. Yucky stuff that you are doing to your child by necessary choice. 10+ years ago the dose was reduced to 1800 gy, which resulted in no noticeable reduction in EFS or CNS relapse but did result in far fewer long-term side-effects in kids. This was good. 1800 gy is still the standard. However, age at diagnosis is a HUGE factor, usually 2 years old being a cut-off, but anyone 5 years and younger is at very high risk for long-term side-effects due to their developing brains. You hear differing stories, but it is all deadly serious. These are still considered relatively low doses as a kid with a brain tumor may get 3600 gy. But still, are we treating too much, or not enough? It's sticky.

Anyway, the Germans (BFM protocol) went down to 1200 gy ten years ago and their preliminary data shows still no statistical reduction in EFS for leukemia. Dana Farber radiates at 1200 gy. St Jude's (top leukemia hospital) doesn't radiate at all. On POG 9404 we get 1800 gy and our kid just turned 3. What to do? Would we even have a choice, especially considering our oncologist is tops in his field as well? They're all on a first-name basis. Can there be a consensus? Are we off base? Should we be sticking our necks out like this? How can we make our case?

So this is what Kerri has spent countless hours researching on the internet, on the phone, in the Stanford library, attempting to get second opinions, you name it. And you thought we just had our sick kid to worry about. We have one chance.

At the end of it all, and this was just last week, we decided that based on our research about giving Spencer the best chance to be cured but also saving all his parts as best as we can, that we would like to make a push for 12 gy. We had to, and wanted to, go through our oncologist for this, who co-wrote our protocol, which we were proposing to change. Hmmm. But because he is one of the best and we respect his knowledge and judgement absolutely we wouldn't do anything without his approval. You may have read a few days ago that the meeting went well and he was more than happy to contact the three other oncologists. And you read above what the end result was. It was HUGE. We really pushed for this, not only because it seemed the future of radiation for leukemia is headed towards 12 gy (already implemented in some high-powered institutions) but that Spencer is only 3. If he were 13, I don't think it would have been as big an issue.

So there you are. Maybe more than you wanted to know, but it is such a part of being unfortunate enough to be diagnosed with such a life-altering disease. Based on what has happened to Matt Hume, and how hard his Mom Debbie pushed and pushed to get the best for Matt, and how dramatically it has paid off so far, we instantly knew on September 2, 2003 that's what we wanted for Spencer. The best, the latest, the cutting-edge. We think we have it. The total package. All the credit goes to Kerri for having that tenacious personality to keep at this and have it pay off. Of course we're not out of the woods by any means, and additional questions arise (for us and others) but this is about as good as news gets around these parts.

Thanks for sticking with my long story.

Tuesday, January 13, 2004 2:53 AM CST

Spencer is still completely wiped out from his last chemo round. He is way more wiped out than we expected and even more so than after his last big in-patient rounds. Today Gramma Betty came over to play but Spencer just wanted to lay on the couch all day. GB got some good snuggle time in though. He perked up when we went to the Post Office, jabbering the whole time, calling himself a "couch potato", which is what Mommy was calling him. He thought that was funny. But once we got home he went right back to couch mode. And he perked up after he took care of some business around 8:30 PM, but then he went right to sleep.

It's nice to get some things done around the house but we are really quite worried about his behavior. We want the crazy Spencer back, and the sooner the better. He has no fever, and his appetite is good. But he does complain of sometimes feeling hot, sometimes cold. Sometime his back hurts, or his feet. He hasn't had quite this reaction to any of the drugs before. We're just constantly speculating - maybe it's the prednisone, maybe it's the vincristine, maybe it's the doxorubicin, maybe his hemoglobin is down. Maybe this whole thing really sucks.

We're really hoping he gets some more energy back tomorrow so we can stop worrying so much. I think we'll call the hospital in the morning anyway. Keep them up to date. And we're going up there tomorrow afternoon anyway.

I threw a few new photos up on the album page so check them out. Thanks for looking and send some good energy Spencer's way.

Sunday, January 11, 2004 2:45 AM CST

We are all just plodding along after Spencer's last chemo round on Wednesday, watching his reaction to the round closely as it is the first time we've not been in the hospital after a round. Overall he seems to be handling it very well. His eating habits are still off, although he is eating, and he is very low energy. He's been going to bed very early - last two nights at 8 PM. That is exceptionally early for Spencer, so he just doesn't feel right. We're so shocked to see him fall asleep that early we don't really know what to do with ourselves. Mom and Dad actually sat down together and watched TV, very strange experience.

He seems to be having less energy as the days go on. And he is still getting prednisone so that may be messing up his eating.
He did have a low-grade fever right after we got home that we think may have been because of the vincristine. But it seems to be gone now although he frequently complains of either being hot or cold. That's about it so again, considering, he's handling some pretty nasty drugs pretty well. He is probably peaking right now so we'll look for an improvement in his health soon.

Daddy took advantage of Spencer's low-key behavior to fix the front door. And it was a nice day at the house so we all went to the beach again. It was a tiny bit windy at first but that died off and it was nice at the beach for a while. But Spencer didn't feel like doing much so we sat there mostly...a very unusual way to spend time with Spencer at the beach. Not much else going on.

Thursday, January 8, 2004 1:30 AM CST

First just let me say that our son is a freak. He actually wants to go to the hospital. Yesterday he was in the car hours before we were ready to depart telling us to get a move on. When we woke up at the hotel this morning he could hardly wait to go. "C'mon Mom. Let's go to the hospital...now!", he'd say as he's pulling us out the door. Once he's there he's just as happy as could be. Even after screaming during his port access, and his asparaginase shots he perks right back up and it's no big deal...happy as ever. Hmmm...a freak, but we'll take it.

So, we successfully completed our first out-patient chemo round. It was a huge, long, long, day but it went fairly well. We arrived for our clinic appointment at 11 AM and only had to have a blood draw, a 15 minute IV push, and the shots. It took until 5:30 PM. But it went pretty well and that's all that matters. I think things will speed up in the future. Super big thanks to Auntie 'Chelle, who came down from the City to hang out with us and Spencer for the afternoon. She watched him while we were at our meeting (during his shots) and kept Spencer's spirits high (and ours) all day.

Speaking of the meeting, the big news is that we had a long-awaited appointment with our oncologist Dr. Link, who is one of the gods of T-Cell Leukemia research. We really wanted him to be our attending physician so we could be confident that he could answer any question regarding the cutting-edge and direction of T-Cell treatment. That has paid off, especially today, even if he is not always immediately available (that's the trade-off).

Our concern is, and always has been, the trade-offs between toxicity of treatment and curing the disease, particularly concerning cranial radiation and Spencer's young age. It was a good meeting and the end result is that Dr. Link is going to consult three other gods of T-Cell, Dr Pui from St. Jude, Dr. Sallin from Dana Farber, and the head of the BFM protocol group (Germany), each of whom may have different perspectives and possibly recommendations regarding radiation. We will follow their advice and be at peace with that decision. At issue is the dose of radiation, not the radiation itself. The evidence strongly suggests that radiation is mandatory for T-Cell patients, particularly those with high white counts at diagnosis like Spencer. The dose of radiation is a little sticker question for us, particularly in a young child as the late effects are well known and possibly serious.

Whatever the outcome, the meeting did reinforce just exactly how serious T-Cell leukemia is. You have to get it the first time or...well,you get the picture. So our protocol, which initial results suggest it is THE top treatment currently for T-Cell, goes in with all guns blazing. And therein, of course, can lie the problem. But it was a very sobering meeting. Sometimes when Spencer is doing so well and in such good spirits it's easy to become disconnected from the seriousness with which this disease needs to be treated. A good heart-to-heart about the life or death of your child, and anything you can or can't do about it, is a necessary part of this experience.

Now we're home. Hopefully the house won't shake too much but I did notice we missed at least five 3.0+ aftershocks while we were gone. And we're on heavy oral medicines for the next five days. Hopefully he'll handle well and we'll keep our eyes on the goal. Thanks to everyone for signing Rocket's guestbook and for all your positive thoughts.

Mom, Dad, & SRC

Tuesday, January 6, 2004 0:56 AM CST

Spencer got to go back to San Simeon Cove again for the 4th day in a row. He just has a great time there. The bubble guy was there again too. Today could not have been more beautiful on the beach at low tide. No people, no wind, crystal clear, peaceful and fun. And we got to miss another aftershock as well. And just a few minutes ago (it's 11 PM) there was another good size one (3.8). Spencer fell asleep twenty minutes ago and slept through it. Some things are going well.

We are headed back up to Stanford on Tuesday, then probably spending all day at the hospital on Wednesday for various appointments, meetings, blood draws, chemo, shots, you name it. We may be back here Wednesday night, and maybe not.

And Spencer still has a minor runny nose but no more cough. Looks like he's being able to fight it off, while Mommy is getting worse. She is miserable. Daddy is a lot better but still can't get the last symptoms to completely go away. I'm sure they'll love to see us at the hospital. This cold is very contagious as Auntie Kendi has it now, and so do Grampa Ernie and Gramma Kristie after they took off in our car the other day and watched Spencer while we were at the movies.

So, back to the medicine grind starting tomorrow.

Sunday, January 4, 2004 1:32 AM CST

It goes without saying that cancer has rocked our world to its foundation, but we're also getting pretty tired of the world rocking our foundation. Check out this website if you want to see the waterbed we built our house on - http://quake.usgs.gov/recenteqs/FaultMaps/121-36.htm

At the top of the page it tells you how many earthquakes happened on the map in the past 7 days. Keep in mind that a week ago the number was over triple what it is now. You can also go to a list view of the earthquakes with the link at the bottom of that page. We had a 3.4 this afternoon and that was enough for Spencer. He is now hysterical, jumping at any sound that can't be immediately accounted for. He starts crying and covering his ears with his hands. And he wants out of the house, offering both the hospital and Gramma Betty's as alternatives to his own house. His own house, which used to be his safe haven. And we had another 3.7 just as he was getting ready to go to bed. Anything over 3 gives the house a good rocking, over 4 and it starts getting noisy with unidentified things bonking and snapping. The 4.2 we had two nights ago was the weirdest thing I've ever experienced. For some reason I was wide awake at 2:45 AM when I heard what sounded like someone plucking the world's lowest bass guitar note - booowooooing. Then a few seconds later things started shaking pretty hard. Beeezaaar. Fortunately Spencer slept through that one.

They say we are having more than a normal amount of aftershocks with still the potential for a 5.0 or higher, with the chances decreasing day by day. But they also say the aftershocks can go on for months and even years...yes, years. Great.

Other happy news (sorry, it hasn't been the best week) is that Spencer is coming down with a cold. It is still fairly minor at this point and let's hope it stays that way. He has a clear runny nose and a moderate short cough. It was that way nearly all day with no change, and no fever. Crossing our fingers he can fight this off.

And we are very saddened to learn of one of the ALL listserve (internet list for childhood leukemia) kids relapsing on treatment only 4 months after diagnosis. She is very popular (particularly her dad & mom's posts) with the list and this has freaked everybody out, particularly because she was doing so well with a relatively low-risk diagnosis. You develop a strong bond with the people on the list even though you don't even know them. They are the people who are in this strange parallel universe with you. It's like we are in our own separate boats all trying to sail through the same hurricane. When you learn of one boat having trouble it really affects you. We are all hoping things improve quickly for them ( www.caringbridge.org/canada/julianna).

Here's hoping for a calm night and tomorrow.

Saturday, January 3, 2004 1:58 AM CST

We are still on pins and needles around here as Kerri's cold is still pretty bad but is easing up. And Dad has also come down with a cold, which is also easing up now. Is it possible that we could both catch fairly bad colds and Spencer doesn't? He has had a couple episodes of drippy nose lately but not too bad and easily attributable to other factors happening at the time. It would help to get lucky once in a while.

Kerri's cold has been bad enough for the past three days that she has had to keep completely away from Spencer. Dad has been taking Spencer out of the house to do errands and play for the past couple days. And we have both been wearing masks around the house, not to mention washing our hands about 4000 times per day. After an experience like this I think we are going to be even more careful in the future, especially at this time of year.

Today Dad took Spencer to see the elephant seals (big surprise, huh?). Spencer got to see some moms with their pups, a newborn pup with the seaguls still chomping the afterbirth, and a small fight between beta-males. Spencer thought it was all very cool and was very chatty about it. Afterwords we went down to San Simeon cove and played with trucks and his stomp rockets. And a nice guy pulled out his hand lathed "bubble brush" and blew bubbles for Spencer. That captivated him for an hour easily. The guy could blow big ones and small ones and even blow bubbles inside of bubbles with this bubble brush. Very cool.

Something that tends to get lost amid all this leukemia crunch is what a great kid Spencer has become. Especially in the past 2 to 6 months he has really blossomed into the best kid ever. He is nearly always happy and kind and sweet. He's bright and laughs at everything, including himself. Of course there are the occasional meltdowns and there can be some predinsone rage near his chemo rounds but if you filter out the kid in him he is just the best.

Next up is a trip to Stanford next week. We'll call on Monday to see about our appointment with our oncologist and then see if we go up Tuesday or Wednesday. Spencer's white count should be creeping upwards now and we're certain his ANC will be over 500 by early next week. This will be our first out-patient chemo round, which we're a bit nervous about because he'll certainly feel bad for a few days afterwords and we'll have him at home for this. It's scarry being away from the hospital when Spencer has problems. Hopefully he will handle things well.

Thanks for reading and have a good first weekend of 2004.

Wednesday, December 31, 2003 1:32 AM CST

It is now time for our first test - Kerri has come down with a cold, a quite painful sore throat and a bit of coughing. She wears a mask around the house now and can't snuggle with Spencer at the moment. Hopefully it won't last long. Needless to say we are quite paranoid. For now Spencer is staying healthy.

And it was a struggle but we finally got Spencer his blood draw today at Sierra Vista Hospital. His new mediport caused a bit of a shuffle trying to get the draw done. Our home-health nurse is out of town and the others who were qualified to draw from a port on a toddler were not available so we had to go to Sierra Vista. Spencer was quite loud during the draw but the nurses were great and everything went smooth and quickly. And yes, Spencer is still neutropeanic, meaning our chemo round is delayed until next week, just like we predicted. His continued low white count has us even more worried about Mommy's cold.

After the draw Gramma Kristie and Grampa Ernie stole off with our car and our kid while Kerri and I went to see Lord of the Rings. Radical movie, although Kerri, an expert on the books, would have rather seen more intimate story development and less battle scenes. I can understand that but it is a truly epic film.

Spencer hung out with the grandparents and apparently had a great time and didn't miss us at all. But he ran and hugged us when we got back and he immediately wanted to home. Suuure he didn't miss us. We missed him.

So Kerri and I went and did something together without Spencer for the first time in a long long time. It was fun but every experience is now tempered by our circumstances. Both of us think a lot more about heavy stuff than we used to and we just can't relax, ever. The rest of the week will be spent getting Kerri better, keeping Spencer healthy, and dealing with end of the year business. Thankfully the aftershocks have quieted down a bit. Everybody please have a Happy New Year.

Kerri, Brian, & Sprocket

Saturday, December 27, 2003 2:46 AM CST

Besides all the shaking, which went on forever and is still going on, Spencer had a great Christmas. There were more presents to open than aftershocks, or so it seemed. He even got past most of his oral medicine from the last round so he was able to enjoy the past three days unencumbered.

Spencer got some planes, some trucks, some rockets, some cars, some trains, some books. One of the coolest things he got was two autographed pictures from space shuttle astronauts. They even gave him a super cool NASA jacket. They are going to get him an autographed group photo from their shuttle mission. And they're going to put up a photo of Spencer with his jacket on in the Space Center. Uncle Dave from Florida got all this going. Spencer might be a bit fuzzy on the details but we think it's pretty cool.

And predictably Spencer's favorite presents were the simplest ones. He got a little monster truck from Uncle Alan and his family, and he got $2.00 foam squeeze rockets from Santa. He carries both those around everywhere and just sort of tinkers briefly with the other more elaborate stuff. He had an hour-long rocket shooting session with Gramma Betty. Although he played with his car-carrier truck for a long time on Christmas.

We had Christmas over at Gramma Betty's house, which is about an hour away, and we stayed the night. It saved us the late night drive home but the big big big motivation was to get some sleep because there were sooo many aftershocks the night before we couldn't fall asleep. Kerri finaly dozed off at 7 AM. They are seriously freaking us out now. They better mellow out soon because that's the last thing we need right now, to feel uncomfortable in our own house (which is built like a tank by the way.)

On the way home the day after Christmas Spencer was able to go into the transitional care place and visit his Great Grampa Ernest (94) who is recovering from a hosptal visit. He also got to see Great Gramma Rose. We'd like him to see his great grandparents more often but circumstances just don't allow it very often. But after quite a drought with all Spencer's illness and hospital visits he did have a grandparent bonanza this Christmas. There was Betty and Verne, Fred and Marjorie, Kristie and Ernie Jr., and Rose and Ernest Sr., all around this week. Not to mention Aunti Kendi, Dave, Kelly, Steve, and Duke. It's very rare Spencer is able to socialize with that many people and he was very excited about it. And he was a super good boy, and in great spirits the whole time.

So Christmas is over and it's back to reality now. In theory we should have our first large out-patient chemo round on Tuesday but it is highly likely that Spencer's white count will cause us to be delayed a week, just like after each high-dose methotrexate round we've been through before. So he'll get a blood draw on Monday and we'll see what happens. We're assuming we're not going up for treatment this week. But we do have some very important questions for our oncologist as we transition to out-patient chemo and near radiation. We'll be talking to him early in the week. Another update then.

Hope every one had a great Christmas and will have a great New Year.

Brian, Kerri, & Rocket

Tuesday, December 23, 2003 2:37 AM CST

As we were getting ready to head back up to the hospital for another clinic appointment the old nagging question of how to get Spencer to go willingly back to the hospital came up. You just never know how to get a three year old to want to go back there. It is especially compounded because Spencer is so comfortable in his own house that he really doens't want to leave it. There's just too much medicine at the hospital for Spencer's liking.

Well we hope we didn't inconvenience too many people when we arranged to solve this dilemma once and for all. At exactly 11:16 AM we found a way to get Spencer out of the house. 6.5 on the richter scale was maybe a little overboard but it worked. Especially effective were the numerous aftershocks. That was a great idea. By early afternoon Spencer was tuggin on our arms, legs, necks and saying, "We have to get out of the house! We have to go say hi to our friends at the hospital. We have to go say hi to Shannon, and Yeni, and Matt, at the hospital. Come-on Dad! Let's go. Let's get out of the house! Let's go to the hospital!"

Problem solved. But will he want to come home on Tuesday night? We'll see.

But the earthquake was pretty radical. We were about 10 miles from the epicenter. Fortunately I was standing near the front door and Spencer was right next to me. About 3 seconds after it started it was obvious this was no ho-hum quake, and I already had Spencer up and out the door. We wobbled down the stairs with Mommy and Ann close behind. The house was cracking and moaning and creaking like you wouldn't believe. Trees were shaking. Most radical quake I've ever been in.

So it was amazing that the damage was pretty superficial, videos all over the floor, mirrors and pictures all tilted, cabinets and drawers all open, Spencer's books all out of the case (which was screwed to the wall), plaster and tile grout cracked. Biggest casualties were our fountain out front but it'll probably still work when I put it back together, and a nice dent in our new car from a falling piece of wood in the garage. There were lots of fragile things that were right on the edge of going. If the shaking went on for even 10 seconds longer things would have been a lot worse. The violent shaking couldn't have lasted more than 20 seconds, but man what a ride. Mommy was sitting at the computer when it hit, and on the top of the cabinet above the computer were three Telly Award statues, which would make nice murder weapons because they're pointy and heavy. Mommy got out of the chair like greased lightning when the shaking started and when we came back all three statues had fallen right where she was, putting some nice dents in my new desk. So I figure the dents are Kerri's fault and I'm going to make her fix them.

Spencer wasn't too scared until he asked what happened when we were down in the driveway. Then he broke down big-time. He clung to us like glue the rest of the day and made it nearly impossible to do anything, like pick up the pieces, work, or get ready to go. Two or three aftershocks also got us out of the house. Those aftershocks didn't do too much for Spencer's morale, especially after I'd told him the shaking has stopped. Nice try Dad. I spent the day trying to explain that it wasn't our house that was shaking, but the ground and that everybody's house was shaking. He wasn't buying it and was convinced that our house had a problem that needed to be fixed. And I swear there was 15 to maybe 30 minutes of the day that we didn't have leukemia on our minds. Okay, maybe only 20 seconds.

So here we are at Stanford again at the hotel. It is a good thing that we aren't staying the night at home. A couple late-night aftershocks would be all we'd need for Spencer never to want to come inside his own house ever again.

Hope everybody's nerves are calming down out there. We won't try such a radical solution to our problems next time.

dDddDDaaaAAAddDDddDDd

Sunday, December 21, 2003 2:02 AM CST

We've been home now for three full days and Spencer has bounced back nicely. He went from zero to 60 on the first afternoon back and has been wearing us out ever since. Pretty tough when we're waaay behind on things already because of being gone for nine days, then to have Spencer raring to go at all hours.

He does tire quickly when there's too much physical activity going on. We went on a short bike ride today and we got off to run around a bit. After about ten minutes he'll just stop, give a big sigh, then say, "I want to go back to my house." And that's it. Not that he goes home and takes a nap or anything. He still wants to play, watch Pooh Bear or whatnot. Just at home thank you very much.

So the big news is Christmas. At just over three years old he is starting to grasp what some of it is all about, mainly Christmas decorations and Santa coming to bring him presents. We're in the quandry of how to lie to him most effectively. "Well yes, Santa is coming from the North Pole to give all the nice kids presents. He flies in with his reindeer and slides down the chimney. We have to leave cookies out for him." But then we'll put some presents out under the tree...oops, mistake. "No, you have to wait until Christmas. No, they're not from Santa...but...they're from...well...let's just put them away."

The first night we got home Gramma Betty and Poppa came by with dinner and a tree to decorate. Spencer took to it like a pro, putting all the stars up that Betty had just bought. But the next morning he was busy taking them all off because, "It's not Christmas!" Okay. The twelve days of creating a monster. He is excited though.

Auntie Kendi, and Dave, Steve, and Kellie are in town from Florida and the plan is for a get-together tomorrow. Spencer will like that. And oh yeah, Duke is here too. Sorry about that Duke. Did Dave and Kendi sedate you on the plane ride? Spencer will tell you a thing or two about planes.

The only hump to get over before Christmas is Spencer's clinic appointment on Tuesday. So we'll head to Stanford on Monday afternoon and be back Tuesday night. Then we're all hoping for a slowdown.

Merry Christmas to everybody.

Daddyrocket, Mommyrocket, and Spencer

Wednesday, December 17, 2003 2:48 AM CST

Sheesh! What a day! Kind of reminded me of the days soon after diagnosis where things were kind of bumpy. Needless to say the surgery wasn't exactly smooth sailing, nor was the rest of the day.

But first, on Monday we did get to go to the Airplane Museum and Spencer had a great time. That is such a perfect place to go with him. It's just ten minutes away, just off the 101. It's in a big open hangar-type building with quite a few cool planes in there. Wide open and nearly nobody there. Perfect for a cancer kid. We had the flight simulator all to ourselves. In fact, I didn't see another person in the plane exhibit room.

It was a cool and sunny day but the wind was blowing from the south (unusual), which meant the small planes on the runway outside the back fence were taking off and landing right next to us. Spencer thought that was the greatest. One guy was doing touch-and-goes (new word for Spencer) which thrilled him to no end. He's still talking about it. In fact, now when we ask if he wants to go home, he says, "no. I need to go see the planes take off and land, at the museum, before they close." It was a nice day.

Then there was Tuesday. We were supposed to arrive at the hospital at 9 AM, but when they called at 8:10 AM and asked where we were, the day wasn't starting out so great. Apparently they moved us to 7:30 and forgot the most important part - telling us. I bolted out the door and was there in 5 minutes, only to wait until 10:45 for Spencer to be taken back to the Surgery room.

There were delays everywhere, and a big communication snafu between the OR and Clinic D (oncology) about giving the L-aspariginase shots during surgery. It took some muscle, a momma on a mission, some bruised egos, and a nearly delayed surgery, but it all worked out and Spencer got his shots pain-free (sort of) while he was out. Good thing too because with how surgery went we wouldn't have made our afternoon clinic appointment anyway.

So then his 45 minute surgery took 2 hours, seriously alarming the parents. When your beeper doesn't go off and doesn't go off and doesn't go off, well you start to freak out. Finally they said they moved him to the recovery room. But it still took another 1/2 hour for them to let us back there.

Apparently there were some complications. The biggest one is they had a lot of trouble threading the line through the vein. They kept hitting some narrowed portion (thrombosis?) in the vein and the line would go off in a different direction. That took an hour I guess. But they kept at it and were successful. He also had a very large movement during surgery, to put it nicely. Then he actually threw up when they removed the tube from his throat. This alarmed them quite abit and they quized us again about when he last ate something. I don't think they quite believed us. It's still a mystery.

When he came around he was very out of sorts, and he still is. He has a low-grade fever, is trembling, and is hardly moving or talking at all. Most of this is understandable but he bounced back from his other surgical procedures much more quickly than this. I think his whole upper body is in pain, probably from having trouble inserting the line. If his fever goes down he'll have to take his tylenol. We couldn't give it with the fever because it would have masked the fever if it got worse, possibly hiding an infection. But late tonight it seems to be going down.

The one fun thing for Spencer (well, just for the parents probably) was that some of the San Francisco 49ers were handing out teddybears up in the playroom. Spencer got a bunch of autographs and a new 49er T-shirt.

Then we did some last minute errands and we were about to hit the road but just at the last second the fevor prompted us to return to the hospital to ask some questions. End result was that everybody thought it'd be a good idea to stay close by until Wednesday just to be on the safe side. We just weren't comfortable taking off for a 3 1/2 hour drive away from the hospital. We'd been there before with some complications and weren't too keen on going through it again. So we checked back into the hotel (after an hour delay trying to arrange the room) to zone out to some videos. Thank god for Pooh Bear. We'll see how he's doing when he wakes up.

Poor little guy is getting hit pretty hard. Just when he gets going again we knock him down again. And we'll keep doing that for more than two years. The cancer treatments that have been developed in the past ten to twenty years are truly remarkable, almost unbelievable. Achieving near miracles on a daily basis which we are all thankful for. But man do they suck too.

Sunday, December 14, 2003 11:31 PM CST

Congratulations to Spencer - he was released from the hospital from his final in-patient high-dose methotrexate round earlier today. The drugs are still hitting him pretty hard as he is a bit down and unenergetic, but all things considered he sure handles it well. We just hope he will bounce back quickly. He made a big bounce back when he learned we were being kicked out of the hospital. He was positively giddy, bouncing around the unit like a normal Spencer, hugging nurse Shannon and telling her he'll miss her. He hasn't been very active around 2-North like he usually is. Yeni couldn't even cheer him up when she came in to take his vitals. He must have been feeling down because she always gets Spencer going.

But once we got out he was a blabbermouth and really happy. But he couldn't keep that up for long so he took a nice long nap as soon as we got back to the cottage.

We've now moved into the Stanford Park Hotel waiting for Spencer's line replacement and L-asparaginase shots on Tuesday. Spencer seems to be excited to eat but can only handle a few bites before he stops. He must have a bit of nausea going on. And his legs and knees seem to be hurting, which is a common side effect of vincristine, which he unfortunately gets every round for the next two years. No break from that drug. He sucked down a special good-boy chocolate milk shake and is now asleep for the night, and it's not even 10. Kind of wish he'd go to bed this early (yes, 10 is early for him) every night.

Spencer was so excited about the airplane presents he got for his birthday from Lisa and her kids that we've promised to take him to the airplane museum himself tomorrow. Hopefully he will have some energy to see some planes. That should be a good day-full for him. Thanks to everyone for checking in on Spencer during this last chemo round.

Mom, Dad, 'n Sprocket

Sunday, December 14, 2003 11:58 AM CST

I just received a phone call from Master Spencer and he has informed me that, "WE'RE GETTING KICKED OUT OF THE HOSPITAL!!!!! WE DON'T NEED MORE MEDICINE. THEY KICKING US OUT. YEAH!!!"

I stayed at Lisa's cottage last night while Mom stayed with Spencer. So now I'm heading out to pick them up. Sounds like he's pretty happy about it. As he should be.

This is pretty big news and we'll have some comments from Spencer himself later. I was suprised Bush didn't mention it in his speach this morning.

More later.

Saturday, December 13, 2003 10:47 PM CST

Whoops. Spencer's methotrexate level actually went up a tad to 0.13 with the last blood draw test. So, another night in the hospital for the dude. We were pretty much telling him, without actually promising it, that we were getting out today. He doesn't seem too disappointed though. He is still a bit low energy, wanting to snuggle a lot much to Mommy's delight. But he has perked up a bit and ate a few bites of pasta for dinner.

Spencer got to go to Pet Therapy at the play room today, where he posed for some pictures with the doggies. He likes doggies. Or maybe they were raindeer because they had some silly red antler hats on.

So that's about it. Still waiting to clear. Spencer is examining his beeping IV pump at the moment, getting a bit more intersted in things. Nurse Lea is fixing it. Those nurses, they can fix anything. All better. Back to Winnie the Pooh.

Good night.

Saturday, December 13, 2003 1:34 PM CST

Dateline - Saturday morning. Spencer's methotrexate level took quite a long time to come back this morning, but nurse Leslie just reported that it is at 0.12. If any of you read my previous post I said it had to be 0.18 or less for us to be released. Well, that wasn't entirely correct. Normally it is 0.18 but since Spencer had such bad mouth sores during his first high-dose methotrexate round he got bumped down to a 0.1 clearing level kid. So we are not quite there yet, which means some more time in the hospital. They will take his level again late this afternoon so we could still be out of here this evening.

We also just got a visit from one of the surgeons for a pre-op appointment. Nice that we could do it in the room. That went well and everything is a go for a Tuesday morning port procedure. We are a bit uncertain about putting in a port rather than a Hickman catheter but we're going for it. I think it will be good in the long run but it might take some getting used to.

Otherwise Spencer is not feeling too well this morning. He's doing his closed-mouth low-talking thing, kind of like his mouth might be starting to hurt him. And he is low energy. We walked around a bit and he took a few bites of pasta and a few sips of cocoa, which is great, but he's a bit moany and mostly wants to lay on the bed. It is understandable with all the junk he has in his body but even though he wears us out when he's his normal energetic self, we'd rather he be bouncing off the walls than feeling down like this. At least this is his last big round and hopefully he'll snap out of it quickly like he has before.

Thanks to everybody for keeping track of Spencer and thanks to everybody who has signed his guestbook. That really helps us all get through this. We need to email some direct thanks at some point. Spencer says hi.

MOMDADNSPENCER

Friday, December 12, 2003 1:38 PM CST

We are live from Spencer Rocket's room, room 53A, at Lucille Packard's Children's Hospital at Stanford. It's 11:45 AM and Blues Clues' is on the TV. Slippery is on the screen at the moment. Spencer is not exactly watching it however...oh, now he is. He's got three monster trucks with him on the bed. Spencer's roommate Joshua just came back in the room with his mom. As roommates go Joshua is a pretty good one. Better than us probably. Dr Quo just walked by out in the hall.

Lubena just brought in some supplies to change Spencer's dressing. His catheter is being held in place by steri-strips because the stitches pulled out again. (mail time on Blue's Clues. They just got a letter). We just got confirmation that Spencer's catheter will be replaced with a portacath on Tuesday at 10:30 AM, be there at 9. Pre-op appointment will be sometime today. The surgeon should be stopping by the room. So we've got an extra surgical procedure to go through this trip, but better sooner than later. This will save us a trip up to Stanford right after Christmas. And his catheter has to be replaced. We are fortunate that it made it through this last hospital round.

A portacath is a catheter that is completely under the skin. Now there will be no more dressing changes, which are very traumatic for Spencer. No more daily flushing. And he will eventually be able to go swimming. The only negative to the port is that when he gets a blood draw or any chemo administered there will be a needle poke. But hopefully he will get used to that. It only pierces a thin layer of skin so shouldn't be too bad.

And nurse Lubena has just reported Spencer's current methotrexate levels. Let's see. Here it comes. And the number is...0.23. Oh, so close. His level needs to be below 0.18 to be released. I still imagine it will be on Saturday morning. Lubena has just turned up Spencer's hydration on the IV pump. (Joshua's phone is ringing.) That number is pretty much right where we expected it to be.

Poor Spencer is kind of hungry but doesn't have much of an appetite for anything. We've already tried the hospital breakfast (oh, that's yummy), his leftover California Pizza Kitchen pasta, and made him some bean dip. He managed one bite of each before rejecting them all.

Now we'll go to the weather desk to get an update - Well we're having some increasing cloudiness today and we've already gotten a few sprinkles here and there. Our rain chances will increase into this evening. We will also have increasing chances of darkness this evening as the sun is once again forecast to go down. Hopefully Spencer won't be too scared from that. Now back to you.

Now it's time for so-long, but we'll sing just one more song. Thanks for doin' your part. You sure are smart. You know with me and you, and my dog Blue, we can do anything, that we wanna do. See ya later. So long.

And we're out.

Oh, lunch is here. You want some Spencer?

Thursday, December 11, 2003 2:05 AM CST

We have settled into our next chemo round now. We got in the room about 2 PM on Tuesday but sat around until 11 PM until the first chemo was administered. This was the doxorubicin and vincristine. Then 8 hours has to elapse before being hooked up to the 24 hour IV methotrexate. He'll be done with that big yellow bag (he calls it peepee) about 8 AM Thursday morning. Then that has to flush out of his system until his methotrexate level is 0.1 or less. That'll probably take until Saturday morning. Then we're out of here.

On Wednesday morning he also had a lumbar puncture and two L-aspariginase shots (intramuscular). It's kind of good to group those two nasty things together because he gets mild sedation for the LP. If you want get the willies then I'll tell you what the lumbar puncture is. They insert a long and nasty looking needle into his lower back until it punctures into the spinal column area, into the spinal fluid. Then they draw out I believe 6 ml of spinal fluid and then put a matching 6 ml of chemo (ara-C in this case) back in. They do this puncture below the end of the spinal chord so there is no possibility of the type of damage I know you were thinking of.
However, Spencer has to stay totally still because you don't want the needle wiggling around. You really don't want any foreign stuff contaminating the spinal fluid (like blood).

The reason for the IT (intrathecal, another word for LP) is that the IV chemo drugs don't do a good job crossing the blood/brain barrier, meaning into the spinal fluid. And the spinal fluid is a place where leukemic blood cells may hide, and the cns (central nervous system) is a common area where relapse occurs. Now that you've had your leukemia lesson for the day, back to Spencer.

Spencer was a bit loopy for the procedure because of the drugs but he did great. He managed another little "owe" during the LP, and cried pretty good for the shots in his thighs but only was pissed at us for 30 seconds or so. Toddlers on drugs. Then he got to go to the toybox. Yep, another little car.

During the afternoon playroom session he got to get a teddybear from Santa. Mom took him to the play area where the firemen were escorting Santa around with a big pile of bears. It's the first time Spencer didn't cry when he say Santa. I guess he's experienced worse things since the last time he saw Santa and figured the guy wasn't so scarry after all.

Then we hung out and watched some Winnie the Pooh after Spencer took a nice nap. He's not eating anything right now, which is pretty normal. And he misses his house. He wants to be unhooked from his "stoopid" IV pole and go home. We'll oblige him at the first opportunity. Thanks for reading.

MOMDAD&ROCKET

Tuesday, December 9, 2003 2:15 AM CST

Well we're up here in Woodside in Lisa's cottage, ready to head to the hospital in the morning for our next in-patient round. We got here kind of late because things are so hectic with the business now. Crazy day. Mondays are always nuts in December. Thanks to Toni for coming over and helping.

Spencer had a great time playing with both Toni and Gramma Kristi and Grampa Ernie. Ernie got a workout having to chase Spencer around and around the house - currently Spencer's favorite game. He'll finally let you catch him if you tickle him when you do. But you've got to stop as soon as he says, "I'm sorry". Then he takes off again, ready for more. He can keep it up for hours.

Spencer's been doing so well we're not really sure how to explain that we're going back to the hospital for some yuckie stuff. Not that we flat out tell him it's time to head to the hospital for 8 days. But he's pretty smart. He wants to know where we're going, and of course why. We tell him we're going "To Matt's house", which is what we call Lisa's cottage in Woodside.

But of course Spencer knows the hospital is nearby so he made it known that, although he likes Matt's house and wants to go there, that he wants to go right home after we stay at Matt's house. Somewhere in there we left out the hospital. Hmmm. Thank goodness this is the last in-patient round. He's getting too sharp to fool anymore.

Well, wish Spencer well this week. And please sign his guestbook. No one has signed it for over a week, which makes Spencer a little sad. He knows you're out there because he sees the counter go up..."one, two, tree, foo, fii,...tirteen, foteen, fiteeen." He can count pretty high now so get on it.

Mom, Dad, & Spencer

Saturday, December 6, 2003 2:05 AM CST

Two more full days at home until we head back to Stanford for our last in-patient methotrexate round. Spencer is doing great, except for being unusually crabby when waking up from his naps the last few days. Any sort of out-of-sorts behavior freaks us out we're so paranoid about Spencer getting sick. That really sucks and I hope we get over it one day. For now it is overpowering our lives. Can't do anything normal. Can't be around too many people. Can't go thrash around in the mud when it's raining. Can't plan on doing stuff anywhere.

Spencer was supposed to go help Grampa Ernie and Gramma Kristie set up the toy train set under the Christmas tree on Saturday night, but Great Grampa Ernest wound up in the hospital with pneumonia. Needless to say the train event was cancelled. Unfortunately we got Spencer all excited about it first. But now we are all hoping Ernest gets better real quick. This poor family is getting it from both ends right now. And it sucks because we can't even go to the hospital and wish him well.

Our latest concern is that Spencer has taken such a liking to our version of bean dip that we think he might explode. We couldn't be happier he's getting all that protien in there but I think he's on his thrid bean dip for breakfast and lunch day, and at least one dinner. But he couldn't be happier sitting there with his personal bean dip dish with all his tortilla strips at his disposal. We just hope he doesn't get too much 'macamole on his clothes.

Spencer did get a surprise visit from his buddy Matt a couple days ago. They played more like little kids than toddlers. Matt has really blossomed into a go-getter. They're hilarious together. And they had a great time, as did the Mommies.

So we're just plodding along through the intense part of his cancer treatment. We're all sort of zoned out. Not sure what type of reality we're in but it's definitely some sort of parallel universe. The business is going nuts for Christmas as usual, which means Spencer gets ignored more than he'd like, and we don't have much time to do things like eat and take showers, or call friends. The good new is we're on week two without medicine but that'll change on Tuesday. It's just those nagging every-other-day catheter dressing changes that are really bugging Spencer now. It just involves taking the old dressing off, cleaning the area with betadine, wiping the betadine off with saline, putting a new gauze and gauze wrap around his chest, putting his stretchy shirt back on and perhaps flushing his line. Takes about 10 minutes but he really doesn't like it, which often makes it take 30 minutes or more. We'll see if we switch to an under-the-skin port when this catheter fails. That'd do away with the dressing changes.

We're enjoying the sultry rainy weather here in California. Next update from Stanford I suppose.

Mom, Dad, and Spencer

Monday, December 1, 2003 0:38 AM CST

Spencer woke up late this morning and complained that he didn't feel well (which he says a lot, but doesn't actually mean he doesn't feel well). But we pumped him full of two glasses of cocoa and a bunch of abelskivers (his favorite food in the world) and he perked up nicely. He got especially happy once Gramma Kristie showed up to play.

Kristie bailed on watching the 49er game to play with Spencer, which turned out to be a good decision since the 49ers got royally spanked. If they don't improve Spencer might become a Raider fan...oh wait, they got spanked too...okay, a Charger fan...oh wait...I give up. He'll just be a surfer and be in the water on Sunday afternoon. That'll solve everything.

Anyway, Spencer had a great day showing Kristie all his new toys, and his bedroom. And the fun didn't stop when she left. Spencer played like a madman the whole rest of the day, no nap, all the way until 10PM when Daddy finally had to put the hammer down. Spencer finally figured out what the balloons were good for from his party - taking the weighted string off them and letting them float to the ceiling, then watching Daddy jump up and get them. He thought that was the greatest and I'd say we probably did variations on that for two hours.

Spencer impressed his parents again by putting together a puzzle he got for his birthday all by himself. It's a foam puzzle with probably fifty pieces that are all different colors and crazy shapes that go together to make an airport scene. He put every single piece in by himself, never making a single mistake as to what piece went where. When he wanted to find an adjacent piece he even knew what color the piece was before he went looking for it (he's only worked on that puzzle maybe 3-4 times before). And when he'd pick up a random piece he could find exactly where it went 2 times as fast as Dad, who was shaking his head. He may be behind on the potty thing but he's got the spatial stuff going on. The thought of the radiation therapy possibly doing damage to his spatial reasoning has Spencer's parents unable to sleep at night.

Our Thanksgiving turned out not to be. We were supposed to go out for Turkey dinner with Gramma Betty and Papa Verne, and Mark, Jami, and baby George. But several of the crew came down with colds so the whole thing was cancelled at the last minute. We just hung out at home.

And finally, Spencer is supposed to go back up to the hospital on Monday for his last in-patient high-dose methotrexate round. But his blood draw from Saturday showed an ANC (absolute neutrophil count) of only 300 or so. It needs to be 750 or more to qualify for the next round of chemo. So, we'll find out for sure on Monday but odds are the round will be delayed until next week. That'll give us a week with pretty much no medicine and some more serious playtime at home. And another week older before radiation. Every minute counts.

Hope everyone had a good holiday weekend and didn't do too much driving.

Kerri, Brian, and Spencer

Wednesday, November 26, 2003 2:48 AM CST

Just got back from an overnight clinic visit up to the hospital. Things went very well. We headed up Monday night and Spencer slept most of the way because he played hard all day beforehand - even eating lunch with Grandma Betty at Mission Grill, and playing in Mitchell Park while Mom did a couple errands. It was very cold but he reeeeeeeally wanted to go to the park. He has wanted to visit the park for quite some time and this was his first time to any park since he was diagnosed. It was cold, but at least not too many kids were there. He had fun.

On Tuesday morning Spencer played like a madman all the way until the clinic appointment at 2:30. He was running and running and running, and jumping, and roughhousing like you wouldn't believe. Wore both Mommy and Daddy out.

We actually got to the hospital on time and things went well. The day hospital was full so we had to do the L-Asparagniase shots in the Clinic D treatment room. This turned out to be a good thing because we didn't have to change locations and nurses, which causes quite a delay. So bing bang boom everything was done. After the shot all we had to do was watch Winnie the Pooh for an hour and we could go. Of course he freaked during the shots but recovered quickly, especially after he got a new little tractor.

Then we went up to visit Spencer's buddy Matt who was in-patient upstairs for a scheduled treatment. Spencer and Matt played with Matt's Thomas trains for about an hour. There were a few minor spats but all-in-all it was great. We hope Debbie and Matt and Thom have a great Thanksgiving in the hospital in as much as that is possible.

Spencer slept all the way home, but when he got home he was quite crabby for a while. The one glitch on the day came when we changed his hickman dressing. It appears the top stitch has popped out of his skin where it was repaired last week. This doesn't bode well for it lasting much longer like we had hoped. Let's just hope it at least lasts through our next in-patient round next week. We think Spencer is just so active and rough that those stitches might not have a chance to hold regardless of what we do. We'll see what happens.

Happy Thanksgiving everyone from Kerri, Brian, and Spencer.

Saturday, November 22, 2003 2:44 AM CST

Holy Spencer Rocket birthday batman. Mom and Dad stayed up until 4 AM the night before his birthday superfying his room with a new bed with a fort underneath, glow in the dark rocket bedding, hanging planets and airplanes, the works. When he woke up and saw it... well he was stoked. And we left some presents in the fort for him to find. He was under there for an hour. And he excitedly showed everybody his room for the rest of the day.

As planned, the fire truck rumbled up the driveway at 3PM. "What are they doing here?" was Spencer's resonse. Little Matt was already down the stairs. They got fireman hats, talked to the unbelievably cool firefighters, sat in the seats, turned the lights on, honked the horn, squirted the hose...yes, squirted the hose (that was Spencer's favorite part of his birthday), and then got to go for a ride around the block and even sound the siren. It was insane. Spencer was happy as a clam (not that I know how happy clams are, but I've heard they're pretty happy).

Then there was cake, with construction trucks on top of it, trick candles (he didn't think that was too funny, but he smiled), and a bunch of presents (what? you thought there weren't presents?). It was so cool because it was such a small party but big fun. I don't know how Spencer could have had any more fun. We stayed up until 11 PM playing with all the stuff. In particular the airport that Gramma Betty got him with a thousand pieces and a thousand stickers to put on it Thanks Betty, I think.

He was super excited to sleep in his new rocket bed. He layed down and zonk, didn't move until 8 the next morning. He'd been going nonstop in overdrive since 8 AM, no nap.

Photos are being developed right now (no I don't have a digital camera). There's going to be some good ones. Should be sometime this weekend.

And thanks to everyone who sent bithday wishes to the guestbook. We want to reply back to everyone but we're all just plain pooped out.

Brian & Kerri & Spencer

Thursday, November 20, 2003 5:39 AM CST

3, 3, 3, 3, 3, 3, 3, 3, 3, 3 and 3. The big 3. Today is the big day. Spencer has been talking all week about his birthday. He is truly excited about it (not that we contribute to that or anything.)

We all got home from Stanford on Tuesday night, kind of late, but home. Spencer loves staying at Lisa's cottage in Woodside, but he likes to be home even more. So super big thanks to Lisa and her family for letting us crash up there. It's truly one of the biggest helps of all during this time, especially because Spencer feels so comfortable there. It really helps him to cope. And they even got Spencer a pile of birthday presents from the airplane museum. He's already opened a few of them and is buzzing around the house with his fighter jets, even though he thinks they're rockets.

For Spencer's birthday we were going to have 3 of Spencer's little buddies over for party and cake, Devon, Matt, and Porter. But unfortunately Porter is not feeling well (Spencer hopes you feel better Porter), and Devon was playing with Porter the day before he got sick so just to be on the safe side Devon had to cancel too. It's that time of year.

So, Matt and Spencer are going to have one heck of a play day. Spencer doesn't know it yet but the fire engine should be rambling up the driveway about 3 PM. He's going to either be out of his mind excited, or scared silly. He might even get to take a ride. Other than that just a quiet little party with a few friends. Should be nice. Full report to follow.

And Spencer would love it if everyone who visits his site today would just send a little happy birthday message in the guestbook. Those really mean a lot to all of us. Hope everybody has a great Spencer's birthday.

Sunday, November 16, 2003 3:08 AM CST

Spencer pulled it off today, like the stud he is. We had a delay of most of the day but we were released from the hospital about 7:30PM. Talk about an excited kid. He jumped out of bed and started helping us pack up. "I'll carry this for ya dad!" "I'll come with ya." "We're getting kicked out." he'd tell the nurses. We got a little red wagon to pile our stuff in and Spencer pulled it himself all the way to the car. He was motivated to get out of there.

Spencer also got a couple of very special visitors today. Matt and Erin Pritchard (newlyweds) were in town from Maui for a wedding and were able to blast by for a few minutes. That was very cool. Matt is the 2002 freestyle windsurfing world champ and his brother Kevin is race, wave and overall world champ. Unfortunately they were both injured this year so they'll have to work hard in 2004 to regain their titles. Spencer will be rooting for them.

Earlier we went in the treatment room with a couple nurses and a surgeon to suture up his line. There was some confusion there for a while about what exactly was going to be done, making for some nervous parents. Pain and sedation medication was an issue, as well as the dressing afterwords. But when they were all ready they kicked Mom and Dad out and went for it. We could hear Spencer wailing like a mad man behind the door, which was not too cool. But the little guy was getting sutures in his chest while he was awake. Ouch.

It took about ten minutes but when we came back in the door Spencer was all proud and chipper. "Look! They fixed my line". He got over it in record time and then got to visit the toybox. So we think things went well and we'll be able to buy some more time with the catheter.

And there wasn't much eating going on all day but once we were in the car Spencer let us know that we should proceed straight to the food. Pasta with red sauce to be exact. "Go get it!" We'll work on the manners. But he powered his pasta down, took in a couple "Little People" videos, had his medicine and went right to sleep. He's a good kid. He'll have fun out of the hospital tomorrow.

Thanks for reading. More pictures soon.

Brian & Kerri

Sunday, November 16, 2003 1:30 AM CST

Spencer pulled it off today, like the stud he is. We had a delay of most of the day but we were released from the hospital about 7:30PM. Talk about an excited kid. He jumped out of bed and started helping us pack up. "I'll carry this for ya dad!" "I'll come with ya." "We're getting kicked out." he'd tell the nurses. We got a little red wagon to pile our stuff in and Spencer pulled it himself all the way to the car. He was motivated to get out of there.

Earlier we went in the treatment room with a couple nurses and a surgeon to suture up his line. There was some confusion there for a while about what exactly was going to be done, making for some nervous parents. Pain and sedation medication was an issue, as well as the dressing afterwords. But when they were all ready they kicked Mom and Dad out and went for it. We could hear Spencer wailing like a mad man behind the door, which was not too cool. But the little guy was getting sutures in his chest while he was awake. Ouch.

It took about ten minutes but when we came back in the door Spencer was all proud and chipper. "Look! They fixed my line". He got over it in record time and then got to visit the toybox. So we think things went well and we'll be able to buy some more time with the catheter.

And there wasn't much eating going on all day but once we were in the car Spencer let us know that we should proceed straight to the food. Pasta with red sauce to be exact. "Go get it!" We'll work on the manners. But he powered his pasta down, took in a couple "Little People" videos, had his medicine and went right to sleep. He's a good kid. He'll have fun out of the hospital tomorrow.

Thanks for reading. More pictures soon.

Brian & Kerri

Saturday, November 15, 2003 2:20 AM CST

Spencer and his Mom an Dad had another tough day on Friday. The mouth sores are a definite problem now, but he did have enough relief using pain medication to eat a bit here and there. We really hope they level off. At dinner he was excited to eat some pasta from the Pizza Kitchen but when he tried to get the first curlycue off the fork he stopped with a puzzled look and said, "my mouth don't open." His jaw is probably sore from the vincristine in addition to having mouth sores. He eventually loosened up and ate a few.

Prednisone rage was in full effect as well as he went from sweet to nasty to happy to sad to laughing to crying to cute to horrible several times a piece. He was having a great time in the play room, but then he started showing some signs. Dad got him out of there before complete embarrassment. But Spencer was a basket case by the time we got back to the room. Fun fun fun.

But to top it all off we are now having some serious problems with Spencer's central line. Two or three weeks ago the stitches at the exit point broke away from the skin and the line started to move 1/4 to 3/8 inch in and out of his body, back and forth depending on his activity or position. This was quite alarming as we didn't think this should be the case. But at our clinic appointment last week the NP said it was no problem.

Well today when Spencer was losing it we noticed the line was probably over an inch out. This time the nurses got alarmed. We got 4-5 visits from different hospital folks over the following coulpe hours, including two sets of surgeons. We were pretty much reserved to the fact that on Monday the line would have to be replaced, meaning surgery under general anesthesia. There were several issues complicating this development, and we reeeeally wanted to keep this line in there until his final inpatient round in three weeks. Looked like we weren't going to make it...until the last two surgeons came in and proposed just to re-stitch the exit point. A chest x-ray showed the end of the catheter was still in proper postion on the inside of his body. So tomorrow they'll try to stop the movement at the exit point with some stitches. So the day ended on a positive note. We'll keep that going tomorrow. Good night.

Friday, November 14, 2003 12:02 AM CST

Unfortunately things are taking a turn for the worse for Spencer with regard to his latest Chemo round. He only just finished his methotrexate yesterday and he is already getting mouth sores. This morning he is refusing to open his mouth. These are very painful and make it difficult for him not only to eat but to take his oral medications as well. The first high-dose methotrexate round resulted in mouth sores so bad we had to be re-admitted to the hospital. The last round he skated by without as much trouble. This time things are happening a lot sooner but we're hopefull they won't result in extended hospital time.

Overall Spencer is not feeling well and has been in a very bad mood most of the time. I think his body is hurting and he just generally feels lousy. He is normally excited to go to the playroom once it opens up (at 10 AM and again at 2PM) but he doesn't last long up there when he feels like this, maybe a half hour. Hopefully he'll want to go again today. The visit to the helicopter on the roof didn't work out yesterday. Maybe today.

Spencer should be eligible to get out of the hospital on Saturday morning. And to say he wants to go home would be an understatement. His desire to go home is a large part of his overall uncomfort in the hospital at the moment. He'll start taking some pain medication today and if he continues to eat and drink a little we should still get out of here. We'll keep our fingers crossed.

Brian & Kerri

Wednesday, November 12, 2003 1:18 PM CST

Well we finally got situated in the Hospital yesterday (Tuesday). We are all super happy that we got a private room. That makes a really big difference in comfort for everybody. So the next round of chemo has begun, first the vincristine and doxorubicine and now he's got his 24 hour high-dose methotrexate going. We'll be in the hospital until the Methotrexate clears his system, probably by Saturday morning. And this morning he had his lumbar puncture and L-asparaginase shots. So wham/bam again, including oral predinsone and 6-mp. When it rains it pours.

But he is handling things really well. During his lumbar puncture they gave him 3 doses of drugs to put him to sleep but he just wouldn't fall for it. Typical. So he was awake during the procedure but groggy enough that he handled. He did manage a kind of funny "ow", according to Mommy.

On Monday we had a very long consultation appointment with the radiology department. In particular we had a good talk with Sarah Donaldson, who has been at Stanford for the past 30 years. You might say she knows her stuff. Kerri and I believe that the radiation is perhaps the scarriest part of Spencer's treatment with the potential for the most serious and long-lasting side-effects so we are exploring all the angles. Dr. Donaldson did give us some good news and a degree of comfort about a couple things, but it's definitely going to be a hard road.

If Spencer stays on schedule radiation would be in February sometime. However, any delays would actually be welcome as Spencer will be that much older, with that much more brain development, by treatment time. 3 years old is a crucial cutoff that they talk about and he'll be just 2-3 months past his 3rd birthday.

And speaking of birthdays, next week is it, the big 3. We don't know exactly what Spencer will be doing but hopefully something very fun. We're hoping he'll be feeling well but he'll just have finished a chemo round. Another unknown will be his white blood count, which could limit how much people exposure he has, but we should be at home. We'll have to play that one by ear for now.

Finally, Antie Michelle came by yesterday to visit Spencer (and Mom and Dad too) and we were all greatful for that. We love to see her. Her smile is infectious.

Saturday, November 8, 2003 2:28 AM CST

Spencer really had himself a fantastic day today. We had a bit of a time getting his Septra medicine down him this morning but we're trying a bunch of new ways to do it. But his evening dose he was very understanding and powered the stuff down. Seems like he realizes that we are experimenting in order to make it easier for him.

Spencer's little buddy Matt Hume came over today with his mom and we all had a great time. We had Spencer's big train set up and they played up a storm. Debbie and Spencer raced race cars around the house (Spencer won). Matt dove into the Thomas train set. Then the kids and mommies had a big glitter paint session. Spencer and Matt played so well together it was really fun to watch. It's not too often Spencer has playmates over anymore, which is very sad, but today was too much fun.

Actually we weren't even supposed to be here today. Our scheduled chemo round for last Wednedsday had to be put off because Spencer's white blood count was still too low. We've got a consultation appointment with the radiologist at Stanford on Monday morning so we'll get a cbc that morning and most likely be admitted by afternoon sometime. We fully expect that his counts will be up by then. So we'll probably be in the hospital all next week. One upside to getting off schedule was that Spencer got four full days without any medicine. I think he appreciated that.

Next update from the hospital. Thanks for stopping in and please sign Spencer's guest book.

Brian.

Monday, November 3, 2003 3:09 AM CST

Spencer is doing very well this week. He's eating like a horse, which makes us very happy. And he is back to his sweet sensitve self without as many of his steroid rage type episodes. Gramma Betty has been staying with us for the past few days helping out. Spencer really likes having an extra playmate around. He gets a little tired of his parents. He makes Betty speed his race cars around the house with him, but Betty's knees can't quite keep up.

At first Spencer didn't want to put on his costume on Halloween to go trick or treating. He was supposed to be a bat but wanted to be a race car instead so he just wasn't going anywhere. We eventually buttered him up by carving a race car onto his pumpkin, which he really liked. Then we did some mock trick or treating in the house. That worked and he let us put his costume on him and go to a few houses. Well, he took to trick or treating like a fish to water. We had the greatest time watching him charge up to people's doors, knock, say "trick or treat", get the candy, and then say "thank you" all by himself. Cuteness factor was off the scale. He definitely likes this holiday now and can't wait for next year. I told him he would like it.

We got back from a short clinic trip to Stanford the day before Halloween. This was his weekly L-Asparaginase shots; two intramuscular shots, one in each thigh...not fun. We've found the best way to approach it is to do no preparation for him or the needle sites. I pretend to change his diaper in order to expose his legs then three nurses come in with the shots, hold him down, do the shots, and get out of there, bing-bang-boom, all within a minute or so. Then he gets some toys right after. He screams bloody murder for 60 seconds or so but we all praise him and act like it's no big deal, which it actually is. It seems he has no choice but to go along with it because he perks up within a minute or two. The nurses are always amazed at how well he does. We used to put some numbing cream on his legs and cover it with a patch a couple hours before the shot, but he would get so overwhelmed with anticipation that we had to change tactics. Things are working for now. This was the 3rd out of 20 weekly shots.

And on Wednesday we go back up for our 3rd high-dose methotrexate round, which is a 5-6 day in-patient treatment. We stick around the neighborhood for a few days after as well so we're close by in case of complications, which happened the first time. He's been neutropeanic (low white blood count - high risk of infection) this week and his counts will have to come back up before they'll admit us for this next round. But we fully expect that they will come up. Then we'll start the cycle all over again.

Thanks for looking.

Brian

Monday, October 27, 2003 1:24 AM CST

Just created the page and don't have time for a long update. But 1 1/2 weeks ago Spencer completed his 6 week induction chemotherapy. He passed with flying colors and the cancer is in remission. He is now starting out on the long and hard 6 month consolidation chemotherapy. He has two more in-patient chemotherapy visits for high-dose methotrexate plus two weeks of radiation therapy scheduled during this time. He'll also have tons of clinic visits at Stanford for weekly chemo. So, he'll be busy.

He's such a trooper. He's already downed more medicine in the last 8 weeks than I have in my lifetime. Just pondering the pure longevity of the treatment is enough to scare the wits out of anyone. No kid should have to endure this. But it puts all the concerns and stresses of a normal daily life into perspective. Spencer is now showing us what is important and how to be brave. He is the best kid in the world.

After nearly 7 of the past 8 weeks in the hospital we are currently at home in Cambria enjoying the incredible beach weather. On Saturday we had a great time at the beach in Cayucos with little Matt Hume (Spencer's lifelong buddy and cancer patient (neuroblastoma) at Stanford as well. Don't get me started on what the odds of that are.) I even went surfing for a bit. We were definitely violating the limits for the number plastic toys you're allowed to have on the beach at one time. It was a great way to enjoy the last day of daylight savings time.

Our last large chemo round was 1 1/2 weeks ago and Spencer is doing much better after this one than he did on the one before, when we had to be admitted to the hospital for an additional 5-6 days for side-effects. He is very moody and has some mouth sores, but in general he is happy and is keeping a good appetite. He's enjoying playing with all his new toys and watching his new videos. He is currently in a rabid Dora the Explorer phase. He loves playing in his own house and is genuinely happy to be here.

Of course our lives have hit a brick wall with Spencer's illness, as now our primary focus, and job in fact, is to make sure he makes it through this as well as possible. Mommy is consuming herself with research on the disease and it's treatments, in particular the most current stuff out there and what direction it's going. There are some very big decisions to be made in the near future. And daddy is doing a little bit of everything trying to catch up, and hoping to get the business ready for the Christmas season.

Extra special thanks to Toni Mertens for jumping in and saving our business from certain ruin, not to mention our houseplants. Toni is the best. And thanks to everyone who visited Spencer in the hospital when he was really sick, all the grandparents, aunt Kendi, aunti Michelle and everyone else. Especially Gramma Betty, who's really stepped in to help. It's going to be a long road so Spencer wants to keep seeing and hearing from you all. Keepittogether,keepittogether,keepittogether,keepittogether,keepittogether. Thanks for reading. More updates later.

Brian

Click here to go back to the main page.

----End of History----