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.

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.

October 2002

October 27, 2002

Here is a milestone to celebrate: Erin finished her fifth and last chemo trip to Houston yesterday at 3:00! We were home by about 5:00. It was a full three days and we are very glad to be home!

During the first two weeks of November Erin will have a bunch of tests and surgery to remove her tumor.

Tests to check on the status of the tumor:

CT scan (Nov. 4)
bone scan (Nov. 4)
bone marrow aspiration (during surgery)
MIBG (a very sensitive scan)

Tests to check on Erin's overall health and the effect of chemo on her body:

EKG
kidney function test
vision
hearing
dental
pulmonary function test

The first two tests (the CT and bone scans) are the most important. They will be on November 4. The will tell us about the tumor and will provide the deciding information about the surgery. We will be in Bryan until that Monday. Right now we are scheduled to have outpatient tests every day that week. Some of these tests will be rescheduled to inpatient once we find out about surgery.

October 21, 2002

Erin had a schedule set back today. She had her blood counts checked locally in prepartion for going to Houston. Her white blood and her hemoglobin were good, but her platelets were not quite where they needed to be to start chemo tomorrow. We will have them checked again on Wednesday (tomorrow would be too quick to see much change) and will start chemo on Thursday if everything checks out.

In the meantime, Erin is feeling well and going to school. She had dancing today and was in fine form. She also saw the Wizard of Oz yesterday and really enjoyed the munchkins and the witches.

http://users3.ev1.net/~erinbuenger

October 19, 2002

It's been awhile since our last report. We have been waiting to get some information back from Erin's doctors about scheduling tests and surgery following chemo. Unfortunately, Texas Children's Hospital experienced a computer virus that has affected email and other computer applications for
the last ten days. Communications have almost ground to a halt, so we are still in the dark about much of our early November schedule. We do know for sure that Erin will have a CT scan and Bone scan on November 4. These are important tests because they sill show the effect the chemo has had on the tumor (hopefully, alot!).

As it stands now Erin is scheduled to begin the fifth and final round of chemo this Tuesday (October 22). It is scheduled to last three days. This date is not firm, however. The fourth round has not too many side effects. Erin was able to attend nine of the twelve school days since our return from Houston. The main effect has been on her hemoglobin and platelets. She had one whole blood transfusion on October 10 and another one last night. She also had a platelet transfusion last Monday. It could be that last night's transfusion will dilute her platelets enough to throw
off the schedule next week. I will let you know.

Remember that Erin has a web site. Please share it with anyone who might be interested.

http://users3.ev1.net/~erinbuenger

October 10, 2002

Erin has had a very good week since the last status report. She attended school last Thursday and Friday and every day this week until today. She saw the performance of Ferdinand the Bull last Sunday, and had her friend Nico over last Saturday. She has been bothered a little by the sniffles (like everyone else in the Brazos Valley), but so far, it has not developed into an ear infection (or anything else).

Her counts had fallen by today, however. Erin had a transfusion of whole blood this afternoon at St. Joseph's Hospital here in Bryan. That went smoothly, and we were back home before 7:00. We'll probably have restricted activities for the weekend. I'll let you know when she's ready to get going again.

October 2, 2002

Erin cleared another hurdle today. She finished round 4 of her chemo about 11:00 this morning and we were back to Bryan before 2:00. She was a little barfy on Monday night, but has felt well since. This round will have the hardest effect on her platelets, so in a week or so we will have to go easy on the karate kicks and WWF supermoves.

Erin will be at school tomorrow and will resume her normal activities for a few days until her blood counts start to slide.

The final round of chemo is scheduled to begin October 21 and will also last three days. Two weeks later we will do the first set of scans (CT and bone) since her tumor was diagnosed. We are hoping that all these chemicals have been doing their work and that her tumor will show up as smaller than it had been before we started all of this. If the tumor is smaller, then the next step will be surgery to resect it. We will keep you posted on the details as we learn them.