Pre-Surgical Scans

September 29, 2004

The pre-surgical scans went fairly smoothly on Monday. Nico rode along with us for the fun of it all. The two of them had a good time playing math games, and we started Roald Dahl's James and the Giant Peach. We had a pretty long wait between scans and made it home by 11:00 Monday night. Erin popped up early enough for school Tuesday, but was too pooped by the end of the school day for dance.

I heard from Erin's oncologist on Tuesday with news that the tumor was still there (darn, I had hoped for a miracle), but didn't appear to have nerve or too much more bone involvement yet. I'll know more when I get briefed by the surgeon (probably tomorrow or Friday). The surgery is scheduled at Texas Children's Hospital in Houston for Monday, October 4 at 12:45 p.m. Dr Jed Nuchtern, Erin's usual surgeon, will work with an orthopedic surgeon (Dr. William Phillips) and a neurosurgeon (Dr. Robert Dauser). That's all I know at this point, but I'll fill you in as I go.

On other fronts, Erin will be getting a Science Award at her school on Friday. We are quite proud of her for so many reasons.

Good, But Puzzling

8/13/04

3650 miles later, we returned to Bryan, Texas, having seen much of the southwest. More about the trip later. I want to fill you in on Erin's scan week.

Both the bone scan and the MiBG scan were normal this round. That means that the spot of Erin's liver that appeared on the MiBG in both May and June has disappeared! She also had a hearing test and a test that measured how well her lungs worked. Both of these tests went very well. She had good lung power and only had hearing damage at the very highest range of the spectrum. This means she might not be able to hear butterflies or small birds whispering. She can definitely hear secrets spoken by parents from across the house--behind closed doors, no less!

While all this is good news there was a small piece of the puzzle we haven't figured out yet. Erin's CT scan showed a bone abnormality on/between(?) the 4 and 5 vertebrae. Her doctor is going to biopsy it on Monday. It could be a bone infection, some sort of back trauma, or something else. Since this doesn't show up on either of the other scans, we are reasonably confident that it isn't relapse--just something there that shouldn't be there.

I will post these results, along with the bone marrow aspiration and biopsy which they will also do Monday, when I have them. I will also tell you about our trip and post some new pics.

Thanks for checking in.

Scan and Scan Again

6/7/04

I have neither good nor bad news to post about Erin's re-scan last week. The spot was
still there (less than a centimeter, somewhere in the right lobe of her liver), but a bit smaller than before. The doctor's first inclination is to do nothing and scan again the second week of August. She says the spot could be tumor resolving itself or some benign cells (or, of course, it
could be relapse). It is too small to biopsy or to show up on the other scans Erin gets. Her May urine tests (which have markers for tumor activity) were perfectly normal. And she is the picture of health, otherwise.

I am trying to think of other alternatives to just waiting (regular urine or blood tests between now and August or perhaps a CT scan, just to monitor what is going on). We were hoping that the spot would have disappeared, but smaller is better than larger! I will let you know if we attempt any other kind of monitoring or treatment.

We had a grand time in Galveston, and no one got burned to a crisp. We swam everyday, sometimes twice, and stuffed ourselves with little shrimpies. Erin starts soccer camp tomorrow and is quite excited. Davis left for the Teen Leadership Conference at Mo Ranch yesterday, and cousin Annabelle arrived a short time later to take over his room for the week while she goes to dance camp. Erin's swimming has improved alot, so she has changed the theme for her birthday party (AGAIN) to a lake swimming party. I wonder how many more times she will change her mind in the next two weeks?

Thanks for checking on us!

Missing Tilde, "~"

May 17, 2004

Apologies for such an extended lapse from posting. I had several weeks where I could not access Erin's web site to update it. I knew it was probably something fairly simple, but coming in late April/early May, in the midst of final projects and grading, I couldn't spare a moment to sit on hold with technical support to diagnose the problem. It turned out that Everyone's Internet (the company that hosts this web site) changed the log on procedure so that I needed to add a "~" before the user name when I logged on to post, but no one bothered to pass that bit of information along to the customers. Oh well!

Last I wrote, Erin was scheduled for scans the first week of May. The CT scan, bone scan, and bone marrow aspiration and biopsy came back clean and healthy. The MIBG had an anomaly (a faint, tiny "something") on or near Erin's liver. The doctor wants to take another look in early June (prep for scan on 6/2 and actual scan on 6/3) and see if it is still there.

Dr. Russell has tried to keep me from driving myself crazy over this result. She offered several possible explanations: 1. radiologist error (MIBG's are notoriously hard to read. Several parts of the body uptake the tracer naturally including the liver, so sometimes vigilant radiologists see spots where there really aren't any.), 2. lingering benign or dead tumor cells (matured from the accutane treatment or killed by the vaccine), 3. scar tissue or other type lesion that resulted from treatment. Another thing that gives me hope is that I know of two other of Dr. Russell's patients who have had "something" on a scan in the last six months or so. Both of those cases turned out to be false alarms. I AM DEFINITELY HOPING FOR A FALSE ALARM. A worse options is that we could be seeing tumor cells too small or disorganized to be picked up by the CT scan. If Erin is relapsing, we appear to be catching it early, which will give us more options.

So much for medical news. Relay for Life was an outstanding success here in the Brazos Valley. Erin walked the track from 7:00 until midnight and made 26 laps, either walking or running. That's six and a half miles! She and her friend Nico had an absolutely outstanding time. My nephew Mark Taylor, a Hodgkin's Lymphoma survivor, came out and ran the survivors' lap with Erin. They both looked so healthy and happy, as you can see if you click here. Davis and his friend George did their share for the team, staying on the track during those unpopular hours of 1:00 -3:00 a.m., then striking the tent and loading the van when the bad storms brought an early end to relay. Thanks Davis and George!

Except for the not perfect results, scan week was the smoothest ever. Nico (without mom or brother Adam!) spent the first three days with us. We browsed the bookstore, took in the planetarium show, and of course made our way downtown for some time at the aquarium and its arcade. Ronald McDonald House was a big hit, with a Cinco de Mayo lunch, Mother's Day activities, and of course a lot of playing.

School is winding down for Davis and Erin (I put my semester to bed last week, woohoo!). Davis had AP exams in Calculus and American History when we were in Houston for scans. He thinks he passed both and may have done quite well on Calculus. Davis's 3v3 team won their tournament this weekend! He has the city championship in chess next weekend and one more soccer tournament on Memorial Day weekend, plus finals in between before he is finished with the spring semester.

Erin finished her wildflower collection for school (75 different flowers, I think) and turned it in when she got back from scans. Her class is planning a county-type fair to end the school year, which she is quite excited about. We haven't told her yet that she has to re-do her MIBG scan in a couple of weeks. She won't be thrilled! We are planning to coordinate the re-scan with a family (including the Dallas aunts and cousin) trip to Galveston. We'll do the prep on the way down to Galveston on Wednesday and drive in on Thursday for the actual scan. Hopefully, a bit of beach time will help us all get over the stress of whatever news we receive.

No Tape

January 26, 20004

I interrupt your reading to announce that the MIBG Scan from last week shows, and I quote: "normal exam without evidence of tumor activity", according to Erin's nurse practitioner, Kimberly East. Now, I will return you to your regular programming:<)

I think there will be a little celebratory bike riding this afternoon!

January 24, 2004

The MIBG scan went quite well yesterday, and Erin laid very, very still for almost two hours. She alternated between listening to me read Island Stallion out loud and watching Tom and Jerry on the Cartoon Network (whenever her head was far enough out of the machine to see anything). We'll have the results next week, I hope.

The first time Erin had this particular scan was when the Texas Children's Hospital doctors were doing initial diagnosis and staging. To say it was a complete disaster is no exaggeration. The technician taped her firmly to the table: head, chest, arms, legs, and feet, and began the test without explaining to her what was going to happen. It got worse from there. I was completely useless. I didn't realize that I could exert control over the situation and make demands on Erin's behalf. I learned fast, and now it goes Erin's way EXACTLY, EVERY TIME. Getting over the hurdle of this test was particularly important, because it is the one scans that is particular to neuroblastoma, and she will have to do it regularly until she is an adult. Now she has actually made friends with everyone in Nuclear Medicine (where the test takes place), and has one special friend named Sonny who she adores. In fact, both she and her best bear Rosie dressed entirely in turquoise yesterday so they could match Sonny's work scrubs. It was priceless. Sonny had brought his digital camera, so maybe he will send the pictures and I will post them.

After the test we stopped by the purple pod (Erin's clinic area), and got the report about the bone marrow aspiration and biopsy--ALL CLEAR. That's what we wanted to hear.

What's next? Unless the MIBG scan turns up something unexpected, we are in the clear until early May when we will do all the scans and tests over again! In the meanwhile, the next week at the Buengers is packed full. Davis has school soccer games tonight, next Tuesday, and next Friday, a chess tournament in Houston tomorrow, practice for his Fed Reserve team on Sunday, and a track meet next Thursday. . .oh, and he has to go to school and church. Erin has a birthday party on Saturday, and we have tickets to CATS on Wednesday night. Vickie has a coaching clinic for soccer on Saturday and the routines of teaching (luckily, no grading yet). Walter's department is in the middle of recruiting and will have two job candidates in next week. Oops! I think the person keeping track of the master calendar messed up.

Thanks for checking in on our family!

Quick Trip to Galveston

January 19, 2004

We are celebrating Walter's birthday today. Erin made him a magnificent pasta-decorated, red-spray-painted desk box for his office at work and filled it with many treasures--a glue stick, scissors, a fancy pen with a feather on it (so no one will pick it up accidentally and walk off with it), an onocular, and so on. Davis is working on a lemon birthday cake. It's great when your birthday falls on a holiday!

Erin had most of her scans and tests last week. The CT scan and bone scan were clear (hooray), we don't have results from the bone marrow aspiration and biopsy yet. Bad weather in Canada meant the isotope she needs for her MIBG scan didn't make it to Houston on Wednesday. That scan will now be on Wednesday and Thursday this week. Walter and Erin are going down to Houston for the prep on Wednesday, so that Vickie doesn't have to miss the first day of classes. We will drive back on Thursday for the actual scan. The MIBG is an important scan because it is peculiar to neuroblastoma. The iodized and dyed isotope that is placed the day before the scan uptakes to neuroblastoma cells, where ever they appear in the body. It is very thorough--head-to-toe, and 360 degrees around her body. It takes a couple of hours, and Erin must lie still the whole time.

We managed to mix in fun with tests in Houston. Our dear friends Nico, Adam, and Elaine joined us for the week. We rode the new Houston Metro train from start to finish and back again. We visited the Houston Natural Science Museum, spent a hour in the Chemistry section, and watch the IMAX movie about Life Under the Sea. We also browsed the book store for a couple of hours and each selected a special book to take home. Erin picked the first Boxcar Children book and is reading it herself!

Because the MIBG was canceled (but not soon enough for us to make it home for the night) we loaded up and headed for Galveston on Wednesday afternoon. It was foggy and breezy and sort of cool. I didn't think we would stay on the beach long. Boy, was I wrong. Two hours, three wet children, a sackful of shells, and a bunch of sand later, we were headed to WalMart to buy fresh clothes. After a meal of shrimpies, we drove out to the ferry. Even though it was dark and foggy, we chugged across to High Island and back. Everyone was delighted and sleepy on the way back to Houston.

Just Going to School

November 4, 2003

We heard from Erin's doctor moments ago with the great news that all of Erin's tests (CT scan, bone scan, MIBG scan, bone marrow aspiration and biopsy) from last week were clear. We were not really expecting to hear otherwise, because Erin looks and feels so well, BUT it is much better to hear the final results than just to hope or expect them to be good.

I haven't written much about Erin lately because it is sort of mundane (in a good way). She has been healthy and happy. She loves her first grade teacher, Miss Hanson, and her student teacher Ms. Sims. She has two good (old) friends at school who she sees everyday--Nico and Ayeesha, and two good (old) friends who don't go to her school who she sees when she can--Katie and Tiffany. She is also making loads of new friends at Mary Branch Elementary.

In many ways it seems like Erin has picked up her old life where she left off without really missing a beat. Her dance lessons have expanded to an hour and a half each week, with the addition of jazz. I don't know if she is at all graceful or coordinated, but she wears a smile the whole time. She also goes to the marvelous children's music program at First Presbyterian Church on Sunday afternoon for two-and-a-half hours of singing, handbells, drama, and fellowship. Thanks to all the staff, volunteers, and helpers who make this program happen!

Erin's soccer team, The Sharks, will conclude their fall season next Monday evening. She has a blast with Jackson, Bailey, Junior, Josh, Nestor, Dustin, Tori, Noah, and of course her buddy Nico. While The Sharks have not outscored their opponents yet, they love to play their positions: outside runner, inside runner, hammerhead, and T. Rex, oh and also the position some of you might recognize. . .goal keeper. They also have fun at practice playing Blob Monster, World Cup, and Soccer Red Light, Green Light.

The rest of the family is trying to keep up :>. Davis's soccer team was undefeated until last Sunday when they took a loss in a tight game to the first place team in the league. He is playing awesome, and I for one am glad to see him play (having missed all the games last fall when Erin was in the induction chemo phase of her treatment). Davis is also doing well in school despite his heavy academic load: Calculus, Chemistry, Physics, AP American History, and sophomore English (plus art and soccer).

Walter seems to have gotten used to being department chair. He is also teaching a graduate seminar this fall, so he has a lot of balls in the air. I am fine as well, though considering how much grading is sitting on my desk right now, I probably should be attending to that rather than updating Erin's website.

Thanks for checking in with us. Erin will have an echo cardiogram in December to check whether her chemo has had any effect on her heart functioning. Scans again in mid-January. In the meantime, with Halloween behind us, it will be a mad dash from now until the end of the year.

October 31, 2003

Erin finished her scans and testing yesterday and we made it back to Bryan for school today and trick-or-treating tonight. We have good results from the CT scan--all clear. I will post other results next week when I hear from Erin's doctor.

Erin will be a cowgirl tonight. I think she is still hoping for a (real) horse as a prop.

October 11, 2003

Thanks to everyone who has visited and taken part in Lunch for Life for neuroblastoma research. The effort is continuing, and although we haven't raised $10 million, we have had a terrific response. If you have taken part, drop me a note at w-buenger@tamu.edu with the subject "I Gave Up Lunch for Erin."

Erin continues to amaze us and everyone around her. She is definitely hitting her stride in school, soccer, and dancing, and she looks and feels great. The rest of us are doing pretty darned well ourselves.

Erin will have the next rounds of scans at the end of the month.

Summer 2003

8/30/03

Sorry for leaving everyone hanging. Erin's bone marrow aspiration and biopsy were A-okay. We just got caught up in the beginning of school and forgot to update the website. Oops. That gives us another completely clean bill of health. The next round of scans will be

October 24, bone marrow aspiration and biopsy
October 29, Bone scan
October 30, CT scan
October 31, MIBG scan

Next Thursday, September 4, is Erin's last day of accutane. The following Thursday, September 11, she will receive her final vaccine. She will then be officially off-treatment!

First grade is tremendous, and Erin has a big time everyday. Dance has started back up and Erin is now a third-year student which means she adds a jazz class to her ballet and tap instruction. Davis and I will be coaching her soccer team this fall. That starts in about a week.

8/15/03

Erin had a sore throat and fever on Tuesday and Wednesday this week, and we thought that might delay her vaccine. Luckily, she recovered and we spent the day at the research clinic at Texas Children's on Thursday. Erin received her next to last vaccine, her last accutane prescription

8/12/03

Medical news first--Erin's scans last week were good. We won't have the results of the bone marrow aspiration until Thursday when we go down for Erin's next to last tumor vaccine, but I will report the results when we have them.

Details from Erin's Make-A-Wish trip and our subsequent vacation:

Walter, Erin, Davis, and I along with my mother flew out of Dallas on July 20 to Jackson Hole, WY. We had to stop in the middle of the road on the way to the Red Rock Ranch to let a baby bison pass. It was separated from its mother and was really disoriented, so it took quite a while for the road to clear. We were all awed by having such a close look at the little, wild beast. What a way to start our week!

Erin positively loved everything that followed. She had her own pony, Macaroni, and two kid wranglers, Brent and Leigh, who let her be a cowgirl all day, everyday. Those two were absolutely fantastic. Besides riding for hours and hours around the beautiful valley that surrounds the ranch, Erin camped out, learned trick riding, square danced, groomed horses, and took part in team penning and many, many other horse-related activities. She saved part of each one of her meals back, so that she would have treats for Macaroni!

The rest of us had an equally grand time. We all enjoyed be completely unplugged from our home lives--no televisions, telephones, or anything electronic. Erin was completely medicine-free, so no worries there either. The weather was gorgeous--very cool nights and very clear days. There were two chefs on staff, so we never went hungry! In fact, we all came back a bit heavier. The folks at Red Rock Ranch took care of us in every way--breakfast on the trail, adult social time, fly fishing, even a trip to the Teton County Fair to ride the midway and watch the Red Rock Ranch pig wrestling team.

We hated leaving Wyoming when the week ended. Luckily for us, we went straight in to the rest of our vacation. We flew back to Dallas for a family reunion with all of the wonderful Thompson clan. We also got to see Aunt Kat, Aunt Elisabeth, and Annabelle before driving west to Santa Fe, NM. Our dear, dear friends from Nashville, Carla and Larry Elmore opened their home (and washing machine) to our family. Erin got to meet and commune with Scarlett, the beautiful rescued dog that Carla and Larry adopted last year. Davis retired to Larry's media room to catch up on a week without electronics (who knows what he might have missed on Jon Stewart's The Daily Show)? The rest of us were content to sit on the portacallis and soak up the scenery (and the cool desert breezes).

After Santa Fe, we drove to Riudoso, another beautiful and cool spot (are you noticing the trend of our trip...we'll go anywhere that it is cool?). Uncle Dave and Aunt Norma spend the summers there in their RV, so we try to swing through Riudoso when we get the chance. This year we had the added bonus of having eight of our friends from Texas (Mike and Diane, Don and Denise, Don and Mary Jo, and Ron and Mary) in Riudoso at the same time. We hiked during the day and cut up with our friends in the evenings. When we had gone through all of our clean clothes, we headed home.

8/3/03

Wow! We just returned from Erin's Make-A-Wish trip to Wyoming with extended vacation to New Mexico, and we all had such a great time! The Red Rock Ranch in Wyoming was truly spectacular and exactly what Erin hoped it would be. The arrangements were wonderful thanks to Trish Langley and Cathy Anderson in the Houston area Make-A-Wish Foundation and to unnamed volunteers in the Wyoming chapter of MAW. We also need to extend special thank yous for the superb hospitality to David and Deborah McKenzie, Carolyn and Harley Stimmel, Hunter and Jon, and Seth, Lizzie, Annie, and Nick. Also, thanks to the all of the other wranglers, chefs, and specialty staff at the Red Rock Ranch for making every minute of everyday to most fun we could imagine. We will be back!

I promise I will update the site with trip details, but we are home for a very quick turn around. I have about 36 hours to wash ten loads of clothes, respond to 155 e-mails, and return all the phone messages blinking on my machine. Erin goes through another round of scans in Houston at Texas Children's Hospital beginning on Tuesday (8/5) and lasting through Friday (8/8). We are hoping for continued good news.

7/6/03

Erin (and the rest of us) continues to have a happy and peaceful summer. This round of accutane is going especially smoothly--mainly chapped lips. She will finish with it on Thursday, and will have only two more cycles to go (my fingers are crossed as a write this. . .which makes typing very treacherous). The last biweekly vaccine will be this Friday. After that she will have vaccines every four weeks, with no intervening blood labs. Yea! Scans are scheduled for the first full week of August (the fifth through eighth, I think).

Erin's Make-A-Wish trip to Wyoming has been confirmed. Erin's wish was to go to the Rocky Mountains and take care of horse and other farm/ranch animals. I think we will fit in some hiking and other mountain activities as well. We leave on July 20 and will be gone a week. Since we didn't know whether the Make-A-Wish trip would get scheduled this summer or next, we went ahead and planned our usual family vacation to New Mexico to begin on July 27. Looks like we'll get two weeks out of the Texas heat! Hooray!

Erin and I will be alone this week. Davis has chess camp in Austin. It is just a day camp, so Walter is going, too. He will do research during the day, and they will stay in a hotel at night. The following week is Vacation Bible School. Then Wyoming here we come.

6/22/03

The birthday party on Friday was a roaring success. Special thanks to Erin's adult friends, Judy and Sharon, and their horse friends, Scamp and Napoleon, for making the horse back riding wish a reality!

Back to Houston again this week (Friday, I think) for the 4th tumor vaccine and the start of the fourth round of Accutane.

6/18/03

Things are rocking along in the Buenger's household, with lots of plans and preparations being made for Erin's BIG NUMBER 6 BIRTHDAY coming up on Friday. The party will include lake swimming, horse back riding, a pinata, lots of games, hamburgers, hash browns, and ranch style bean, a strawberry cake with pink icing, a movie (not yet decided), and a sleepover. Can you tell who has given a lot of thought to EXACTLY how her birthday party will go?

Last week's tumor vaccine went smoothly (a little longer than we expected, but no real problems). No punch biopsy this time, which is a real relief. This week and next week are off weeks for Accutane. On the whole, we are quite happy. I did have to take Erin in to her pediatrician last Saturday morning. We came home with a diagnosis of swimmer's ear. She will take Cipro drops for a week. It's been a long time since we've had a normal childhood illness, but we don't mind.

6/10/03

Speaking of soccer, Erin mixed it up like a champ last week at soccer camp. She scored two goals and won a game called Knock Out! Her only disappointment was that it only lasted a week. Her cousin Annabelle is visiting this week, which means a lot of swimming and other excitement. Today was the first day back at the First Christian Church summer program. She has gone to FCC with Ms. Pat, Ms. Miriam, and Ms. Blanche for many summers. Last summer, she had to miss the last week of the program because she was hospitalized to begin treatment of this horrible disease. It was a triumphant return this morning!

For those of you who keep track of the medical side--only two more days of accutane this round, and then she will be halfway through. This Friday we will go back to Houston for her third (of eight) tumor vaccine. Everything else is running smoothly.

May, 2003

5/29/03

Walter, Erin, and I returned from Houston a short while ago, having completed the second of eight tumor vaccines. We will return for the third one two weeks from tomorrow. Erin's blood and urine labs have been great, and she has had little to no reaction to the vaccine, so far. She will begin the third cycle of accutane tomorrow, and we are hoping it goes as smoothly as the last one did.

School is over for both Erin and Davis. Erin is now a first grader and Davis is now a sophomore. Both had incredible school years. Erin danced in her end-of-year recital last weekend and did a beautiful job. We loved every minute of it (except that we missed Davis's soccer team playing and winning the championship match of the Houston Open). We all got to see his team win the Brenham Thunder Classic a few weekends before. It was the first time I had seen his Magic team play since last spring. Erin had to sit out the soccer year, but will start making up for it next week, when she goes to her first soccer camp!

We are glad we are able to continue posting good news of the site. Thanks for stopping by!

5/18/03

Erin finished her second round of accutane last Thursday and had her first tumor vaccine. The vaccine, grown from tumor cells taken from Erin during her initial biopsy last July, will help her body's immune system seek out and kill any remaining tumor cells floating around in her body. The sequence of eight vaccinations will, hopefully, train her body's natural immunities to continue to do this her whole life.

We will go to Houston one day every other week for nine weeks to receive the vaccine, then once a month after that. On the alternating weeks, Erin will have extensive blood work done locally. The doctor doesn't expect many side effects beyond the tenderness most people feel after they have had a shot. She will also have to have a couple of punch biopsies on the injection site to make sure that no tumor cells are being introduced during the vaccine. These will hurt more.

We are taking these extra post-treatment precautions (accutane and vaccine) because neuroblastoma is a very tricky cancer that recurs in about half children with Erin's stage disease. Erin will have scans again in August and October to make sure everything is still as good then as it appears today.

Yesterday was quite a big day for Erin--two swimming parties, including one in our neighborhood lake. Just a week ago, she would have had to turn down both invitations because of her central line. She had a blast!

5/14/03

To quote a famous (well. . . famous in the Buenger household) doctor, Dr. Heidi Russell of Texas Children's Hospital, "NO TUMOR FOUND IN MIBG OR IN BONE MARROW" (all capitals in original). This is terrific news for us all. Erin will continue treatment as scheduled (accutane and vaccine), but this is the best scenario we could hope for. No signs of tumor in standard tests and scans. No lingering effects from treatment beyond a slightly suppressed immune system. We will be celebrating tonight!

5/10/03

Erin finished scan and test week yesterday. It was a very successful week all around. First, she was very cooperative during everything! I think the technicians got very usuable pictures. Second, her friend Nico (and his mom and brother) went with us to Houston, and we mixed in a lot of fun with the hospital visits. We visited both the Downtown Aquarium and the Children's Museum and had a big, big time. Third, ERIN HAD HER CENTRAL LINE REMOVED. This means swimming, bathing, and No Unsightly Bulge under the dance costume on recital weekend (in two weeks). It also means the doctors don't think she will need it for more chemotherapy!

We only have the results for the CT scan and the bone scan. Both were clean. I will update next week when we get the results of the MIBG scan and the bone marrow biopsy.

Tumor vaccine starts next Thursday. This will last about five months (weekly for 9 weeks and monthly for the 3 months following) and end about the time she finishes her Accutane. By the way, this round of Accutane has been less vicious on Erin's face. On the whole, a very good week.

Radiation

3/25/03

Hooray! Erin successfully finished radiation yesterday, with very little disruption to our family life. She sailed through--no side effects, except a slight dip in her blood counts. We will go to Houston a week from today to begin the tumor vaccine program. I will post more about that when I know more.

3/17/03

Erin had scans last Wednesday, Thursday, and Friday down at Texas Children's Hospital. The days were long, usually 8:00 to 2:00, with no food until afterwards, a lot of waiting, and a great deal of lying very still for long periods. We tried to mix in a little fun, too. We went to the zoo, the Butterfly Museum, and the Natural Science Museum, and stayed in a nice hotel that Erin and her friend Nico really enjoyed.

Dr. Heidi Russell, Erin's Houston doctor, called with results this afternoon and was happy to tell us that the results were very good!

The bone scan was completely clear. Unfortunately, the bone scan and the MIBG scan were done too close together, so the bone scan dye muddied the some of the results of the MIBG. This kept Dr. Russell from drawing conclusions about the MIBG scan. Nevertheless, she was quite pleased with the results, and said that there was no reason to believe that the muddied results were hiding any tumor cells. She could see the original tumor site clearly on the MIBG and it was fine. The CT scan was also inconclusive, showing nothing that could be confirmed as tumor activity. There was some thickening of the cells in the original tumor site, but given the clarity of the MIBG scan in that area and the likelihood that there is scar tissue there, neither Dr. Russell nor the original surgeon, Dr. Nuchtern, were too concerned. Dr. Russell will consult with a radiologist (not the one who read the scan last week, who is on vacation) on Wednesday to see if there is any further information to convey. We will probably have the result of the bone marrow aspiration by then as well. All of this is very good news, letting us know that the treatments have worked so far.

Erin started radiation on the primary tumor site this afternoon, as one more step in the mopping up operation. This will take care of any lingering tumor cells at the margins of where her tumor was resected. Radiation will be over next Monday! She won't have to miss any school, since we are doing the treatments locally. We even get to go on Erin's first kindergarten field trip on Thursday--to the Fanthorp Inn in Anderson.

3/03/03

This weekend Erin and I traveled out of town for pleasure for the first time since last July. We went to Dallas to watch Davis play in the state chess championship and to visit my sisters. The weekend had its ups and downs, including three hours in the emergency room early Saturday morning (4:00-7:00) when Erin spiked a fever. The Texas Children's Hospital doctor guided the ER doctor through the process, so things went very smoothly. The fever went away on its own, her chest x-ray was clear (no pneumonia), and her counts were the absolute best they have been in months. They pumped IV antibiotics into her line for about an hour (just to make sure) and sent us home with instructions to return for more antibiotics if the fever came back. Luckily it didn't.

Erin is really between treatments right now and feels quite well. We did not begin the actual radiation treatments last week as I thought we might. We did meet with a local radiation oncologist, Dr. Scott Goble, who will do Erin's radiation to discuss the preliminary plans. She will be marked this Thursday, and begin treatment the week after spring break. I misunderstood how long it takes to get radiation under way. Dr. Goble had to wait on information and films from TCH, then he and his therapists will take Erin's measurements and positioning data. After that Dr. Goble will spend several days making very detailed calculations. We could start the actual radiation next week, but since we have Erin's scans and bone marrow biopsy scheduled for March 12-14, we will wait to begin radiation on the 17th or 18th.

November 2002

November 6, 2002

Friends and Family,

It has been a confusing day, but it seems that Erin will be coming home from Texas Children's this evening. She has to get a test, a prep for a test tomorrow, and a whole blood transfusion.

The preliminary results from her CT Scan indicate the tumor is smaller. We have not yet talked with the surgeon to see if the Chemo has done all he hoped, but this is encouraging news.

Thank you for your support. We will drive down to Houston tomorrow for a test and then hope to be home until surgery on November 15.

November 3, 2002

Dear Friends and Family,

Erin is in the hospital at Texas Children's in Houston. Her fever went up over 101 on Friday and we took her down that night. Her fever is stable and she is feeling ok. She will probably stay in the hospital until her fever is gone and they have ruled out any chance of infection. That means she will have her CT scan on Monday, November 4 as an in patient. We hope she can leave the hospital by Wednesday.

Erin appreciates email greetings and you may send them to her at

http://www.texaschildrenshospital.org/allabout/Volunteer/eCards/eCards.asp

Thank you for your support.

November 1, 2002

Part 1

Erin had fun dressing like a ballerina yesterday. We did limited trick or treating because her counts were low. We are scheduled to have a whole blood transfusion at St. Joseph's today, but are waiting for a room to come open.

Thanks for all of your kind thoughts and deeds.

Part 2

Erin's fever came up during her transfusion this afternoon. We are driving to Houston tonight to be admitted to Texas Children's Hospital. More later.

Despite ending up in-patient, Erin made the most of Halloween.

Erin, the lovely ballerina (Added 5/31/08)

Aunt Jan and Erin at Mark's clinic (Added 5/31/08)

Delores Haferkamp and Erin (Added 5/31/08)

One of many Halloweens with Nico and Adam (Added 5/31/08)

Brian and Dinny Linn with Erin (Added 5/31/08)

Erin (Added 5/31/08)