History

Journal History

Tuesday, September 18, 2007 9:34 PM CDT

This year's summer picnic raised $3,750 based on our last count, making it our best year ever. We have since had a few more contributions trickle in, so may end up at $4,000.

We are now back from the trip to Sweden. FarFar, Uncle Steve, Aunt Lynn, Daddy, and Frieda all flew to Sweden for a Carlsson family reunion. Everyone missed Anita, but we had a great time. Over 50 relatives came for a reunion that had events on Friday night through Saturday night. There were some late nights and a lot of fun for everyone. We also were able to do some sightseeing around Stockholm. Various relatives helped us visit Astrid Lindgren World, Stockholm's old town, the Stockholm palace, and the zoo. Frieda says Sweden is the best place to go for vacation and wants to go back very soon - only this time with Molly and Mommy.

Special thanks go out to my cousins Anna-Lena and Maria and their for planning the reunion and for hosting us at their homes. I have posted a few pictures from trip.

Tuesday, August 21, 2007 9:31 PM CDT

Frieda had her semi-annual ultrasound on August 21 and everything was normal. Her oncologist again mentioned that Frieda is not following the normal pattern of Wilms' patients - meaning that things are going much better than expected. We will go back for her next ultrasound in 6 months.

Frieda starts 1st grade on August 28. She really enjoyed her summer camp at the school and would have been happy for that to continue. However, she is definitely ready for first grade and is anxious to start.

She is most anxious for our trip to Sweden, where we will be at a family reunion over labor day weekend. Frieda, Daddy, FarFar, Uncle Steve, and Aunt Lynn will go to join over 50 other relatives from Anita's family. It will be great to see them and to continue to keep in touch.

Molly is excelling in her pre-school class. Her teacher frequently tells us how smart she is even though she is one of the youngest in the class. She really enjoys it and is clearly an active member of her class.

With getting ready for a new school year and a vacation, I haven't had time to scan many pictures. I'll probably post new pictures after we are back from Sweden.

Friday, June 15, 2007 10:00 PM CDT

It's taken a while to get back into a routine and have the time to update this site. But I have now added new pictures, primarily related to the end of Frieda's year in Kindergarten. She finished Kindergarten on June 8 and we believe she has matured quite a bit this year. She really enjoyed her Kindergarten year and made a lot of friends. Frieda will go to day camp at the school this summer; many of her friends will also be there, so she should have a great time.

Molly also finished her year at pre-school and starts in a new classroom on June 18. She excelled in her class and easily met all of the development guidelines they watch for.

Frieda and Daddy, along with FarFar, Uncle Steve, and Aunt Lynn, have airline tickets to go to Sweden in the late summer. There is a Carlsson family reunion (Anita's family) near Stockholm. We think Anita would be thrilled that we are going and remaining close with her family.

Monday, April 23, 2007 9:31 PM CDT

I wanted to express our gratitude for the support and thoughts that we have received from so many people during this difficult time. Anita was loved and will be missed by many people. Memorial donations that we have received will be split between several beneficiaries:

Children's Hospital
American Cancer Society
Caring Bridge
Brunswick United Methodist Church
American Swedish Institute

I'm trying to focus now on the enjoyment that Anita had over the last several months. Many of you know that as a teenager Anita moved to the United States from Sweden, leaving 7 brothers and 4 sisters behind. She was able to connect pretty well with her family over the last year and particularly enjoyed the time with her sisters who were able to visit during the year.

In recent weeks, we have also appreciated the support we have received from the Carlsson family. Two of her sisters arrived in time to be with Anita for her last twelve hours, which we believed helped to make her comfortable. They have also been a great help to all of us in dealing with the grief of losing Anita. Two of her brothers, including her twin brother, flew over for the funeral, and the rest have been great support with phone calls and messages. Thank you to the Carlsson family and we hope to remain close in spite of our distance.

I hope to find some new pictures to post very soon.

Sunday, April 15, 2007 3:53 PM CDT

Services for Frieda's grandma, Anita Liston, are scheduled.

11:00 am
Wednesday, April 18

Brunswick United Methodist Church
6122 42nd Avenue North
Crystal, MN

Saturday, April 14, 2007 11:03 AM CDT

Frieda's Grandma Anita passed away at about 6:15 am on Saturday, April 14.

Saturday, March 24, 2007 9:02 PM CDT

Grandma Anita is almost done with radiation treatments on heer head and started a new drug that she takes in pill form every six weeks. We assume that she will stay on these drugs as long as they are helping, then maybe go back to the experimental treatment later. The radiation has made her tired and we don't yet know how the drugs themselves will affect her, but we hope she will have several good weeks between doses.

Anita's sister Monica has come back to visit along with her husband, Hans. Frieda and Molly were very excited to see Monica again and Hans was also an immediate hit with them.

During Frieda's spring break, we visited Grandpa Sam and Grandma Betty in Arizona. Frieda was eager to go the swimming pool in their neighborhood and it was in the 90's every day, so she got to go swimming 5 times in 1 week. The girls also got to go to the zoo, a puppet show, and to a train park twice. We all had a great time and would have liked it to last longer.

Wednesday, March 7, 2007 8:24 PM CST

Granda Anita has had another change in her plans. Her blood tests determined that she is eligible for the experimental treatment that the oncologist recommends. However, the tests required to establish a pre-treatment baseline revealed that there are some cancer cells in her brain, so that needs to be treated first. She will have radiation on her head every weekday for 3 weeks. After that, she should be able to start the experimental treatment that was previously planned.

She started the radiation on Wednesday. The radiation therapist says the tumors in her brain are unusually small because people are usually not tested until they have grown enough to cause other problems. Because of this, the chances of success through radiation are good. He also said that her other tumors are no larger than they were when he last saw her in August. This means the delay in starting the treatment of the liver and lungs should not be a large problem.

The good thing is that Anita's sister Monica and her husband, Hans, will be visiting in March. Monica visited last September and Anita really enjoyed her visit, as did both Frieda and Molly. We are looking forward to seeing them later this month.

Saturday, February 24, 2007 4:04 PM CST

The results of Grandma Anita's recent scan were not as good as Frieda's. While the chemotherapy she was taking has slowed down the growth of the tumors, it has not stopped it. Therefore, she is now being tested to see if she is eligible to be on a study. The study is to test if the combination of 2 drugs is better than taking either of the drugs alone. If she qualifies for it, she will probably get both drugs, but may also get just one of the drugs with a placebo instead of the other. Nobody on the study will get 2 placebos, so we know she will get one drug that will hopefully shrink the tumors.

Anita has had a blood test to see if her blood has the markers required to participate in the study. She has already tested positive for 1 of 2 required markers and will hear in the next couple of weeks if she has the other. If so, she will have several scans before starting to establish base lines for the ongoing testing. The treatment is then administered every 3 weeks for 4 sessions. She will be monitored throughout and also for up to 2 years afterwards because the treatment is expected to continue working after all the sessions are completed. If tests determine that it is not working or she is experiencing negative side effects, Anita can stop this treatment at any time. There is another treatment with a pill that she could switch to or she can go back to what she has been doing.

We will update this as we learn more. Frieda will not have her next ultrasound until August, when she will be about to start 1st grade.

Monday, February 19, 2007 6:50 PM CST

The results of Frieda's ultrasound were good. Her oncologist mentioned that most bilaterals (Wilms tumor on both kidneys) don't have this clean of a result, so we are lucky that there has been no recurrence. The oncologist says sometime between the ages of 6 and 8 is when the chances of recurrences tend to decrease; Frieda is 6 now.

It was great that Frieda didn't have to fast this time, so we were able to have a 1:00 pm appointment rather than being at the hospital before 7:00 am. The downside of the ultrasound is witnessing the entire process. With her MRI's, we'd sit in the waiting room and then get results when we got to the oncology clinic. Today, however, we watched every difficulty they had getting a clear picture and wondered if it meant they saw something. Fortunately, there were no abnormalities in her kidney so we were able to get out of the hospital fairly quickly. She will continue to have ultrasounds every 6 months for the near future.

Grandma Anita had her CT scan on February 16 and will get her results later this week. We will post an update when we have her results and the plan for her treatment.

Tuesday, January 30, 2007 9:15 PM CST

Frieda's ultrasound is scheduled for February 19, when her school and Molly's are closed for President's Day. Since she is only getting an ultrasound and won't need to be sedated, we were able to schedule it for 1:00 pm. After years of getting to the hospital before 7:00 am so she wouldn't have to go too long without eating, we are very happy that we don't have to get the whole family up so early. The other good thing about having just an ultrasound is that it is a result of all of her recent scans showing no signs of tumors returning.

Grandma Anita has her next treatment on Thursday, February 1. They will then do another scan before her next treatment to decide if she should continue on the same drugs. Her oncologist thinks that she is responding well to the treatment so, unless the scan shows tumors growing, she will continue on this treatment. If the scan doesn't look as good, they have a back-up plan that involves immune therapy. She should know what the plan will be in mid or late February.

Monday, January 8, 2007 8:16 PM CST

Grandma Anita saw the oncologist about her latest scans on Monday. The doctor said the results were mixed. The tumors on her lungs continue to shrink, but those on her liver are either the same size or slightly larger than last time. At this point, they are going to continue with the same treatment for at least 2 more sessions, which are scheduled for January 11 and February 1, then do another scan. Depending on what they see on that scan, they will either continue or decide on another treatment. The oncologist will be checking on what the other possible treatments are.

Frieda will not have her ultrasound until late February (it is not yet scheduled). She is back into her normal school return after the holidays. She is also enjoying the skating lessons that she started in January and has learned that it is a lot harder than it looks.

This week Molly has increased her hours at pre-school as Mommy is now working more hours. Both girls enjoy playing with their friends at school and continue to do quite well.

Friday, December 29, 2006 9:31 PM CST

Frieda's grandma, Anita, continues her chemotherapy and her most recent treatment was on Thursday, December 21. Based on the previous times, we were worried that she would not feel well on Christmas, which the Liston family celebrated on Christmas Eve. Luckily, the treatment didn't cause any problems and we had a very good Christmas. The girls had a great time opening presents and playing with their older cousins. We then got to see many of our relatives on Mara's side of the family on Christmas Day. Once we get our film developed, I will post some new pictures.

Frieda is now taking ice skating lessons. Although she has learned it is much harder than it looks, she is enjoying it very much. December has been a very busy month for her as she has been to 3 birthday parties in the 2nd half of the month. She also got to try a climbing wall on a school field trip and said she had a lot of fun with that as well. We are planning on a pretty quiet New Year's weekend.

The upcoming treatment schedule is unchanged. We will be setting up an ultrasound for Frieda around the end of February and Anita is still scheduled for chemotherapy every 3 weeks as long as it is effective.

Wednesday, November 22, 2006 9:13 PM CST

We have now posted new pictures. The photo page now includes a picture from when each of our recent Scandinavian visitors were - three of Anita's sisters.

Monday, November 20, 2006 8:51 PM CST

On November 20, Frieda's grandma, Anita, got another good report from her oncologist. She had a recent scan and the results show that the tumors continue to shrink. This time even the spots on the liver are smaller! It is clear that her current chemotherapy is helping, so she will continue on the same drugs. Anita will continue to get treatments every 3 weeks with the next one on Friday, November 24.

The other good thing from November is that another one of Anita's sisters, Gudrun, visited from Sweden. Three of her sisters have visited this fall and all were very enjoyable. All three - Monica, Katrina, and Gudrun - made a very good impression on Frieda and Molly. Molly still pretends to call them on the phone.

Frieda still enjoys Kindergarten and seems to be learning really well. We have noticed quite a bit of progress in her spelling, math, and Spanish. She also recently celebrated her 6th birthday with a pajama party (not a sleepover, we are not ready for that) with several of her friends, most of them from her pre-school class.

Frieda's next scan will be an ultrasound in late February.

Monday, November 20, 2006 8:51 PM CST

On November 20, Frieda's grandma, Anita, got another good report from her oncologist. She had a recent scan and the results shows that the tumors continue to shrink. This time even the spots on the liver are smaller! It is clear that her current chemotherapy is helping, so she will continue on the same drugs. Anita will continue to get treatments every 3 weeks with the next one on Friday, November 24.

The other good thing from November is that another one of Anita's sisters, Gudrun, visited from Sweden. Three of her sisters have visited this fall and all were very enjoyable. All three - Monica, Katrina, and Gudrun - made a very good impression on Frieda and Molly. Molly still pretends to call them on the phone.

Frieda still enjoys Kindergarten and seems to be learning really well. We have noticed quite a bit of progress in her spelling, math, and Spanish. She also recently celebrated her 6th birthday with a pajama party (not a sleepover, we are not ready for that) with several of her friends, most of them from her pre-school class.

Frieda's next scan will be an ultrasound in late February. I hope to post some recent pictures soon.

Wednesday, October 11, 2006 9:03 PM CDT

Grandma Anita finally got some good news! The tumors on her lymph nodes and in her lungs have shrunk significantly and the tumors on her liver have grown only slightly. This means the chemotherapy that she is on is helping. The oncologist is not overly concerned about the liver; he says if they don't start shrinking they can inject the drugs directly into the liver to help it work better. After 6 months of mostly bad reports, it is great that we have found something that is helping.

If her blood counts are high enough, Anita will have her next round of chemotherapy on Friday, October 15. The plan is for her to continue with these treatments every 3 weeks as long as they are effective.

On Wednesday, October 11, Frieda had her first kindergarten field trip. It was to Murphy's Landing, where the kids could see how people lived many years ago. In spite of it being a cold, rainy day, Frieda said she loved everything about it, from the bus ride to helping with chores that the children had to do in the past.

Also on the 11th, Molly started going to Early Childhood Family Gym Time with Daddy. She spent the whole time running from one plaything to another and had a great time. Frieda would like to go there with Molly, but it is only for pre-schoolers.

Monday, October 2, 2006 9:42 PM CDT

October 2 was Molly's 2nd birthday, so we had a party for her on Sunday, October 1. Molly really enjoyed her birthday and the presents; there is one toy that she does not want to put down. Of course Frieda wanted to help open everything and wants to play with the toys just as much as Molly. It can be difficult when everything is for your sister.

The best part of the birthday was that Aunt Katrina (Grandma Anita's sister) was here from Norway. She is only able to be here 8 days, but it was great to spend some time with her and for the girls to get to know another great-aunt.

Anita has now had 2 sessions of her chemotherapy, but we won't know how well it is working until the week of October 9-13 when she has a scan. She seems to be doing pretty well so far and has been able to enjoy having her sisters visit. We will post an update after getting the results of her upcoming test.

Sunday, September 17, 2006 8:19 PM CDT

We got a total from Children's Hospital and our picnic has raised over $10,000 over its 4 years. That means that this year's picnic exceeded $3,000 raised. We have posted a picture of Frieda and several of her friends at the picnic.

Frieda is enjoying being at International School for kindergarten. Some of her favorite things are swimming and computers, which she has once a week. She has also signed up for a computer "club" one day a week after school. Every day Frieda has Spanish and math and is learning about letters and the sounds they make. She likes it so much that she does not want to come home when we arrive to pick her up.

Frieda's grandma, Anita, has had one session of her current chemo. She has occasionally felt tired and a little sick from it, but it hasn't been too bad yet. She expects to have another treatment the last week of September and approximately every 3 weeks after that. She really enjoyed having her sister, Monica, visit for 2 weeks. Frieda and Molly also had a great time getting to know Monica and continue to talk about her. On September 25 another of Anita's sisters, Katrina, will be arriving from Norway for a one week visit. I think the girls will really enjoy meeting Katrina, too.

Friday, September 1, 2006 8:21 PM CDT

The results of Frieda's grandma, Anita's, CT scan were not as good as Frieda's; the cancer has spread to her lungs. She also had an MRI on her head this week that showed it at least has not spread to her brain. After all the tests and several changes in plans, she started another chemotherapy on Friday. She is taking a treatment in which she goes in for about 4 hours and gets 2 different drugs through an IV drip. She will go back every 3 weeks for the treatment. It is an aggressive treatment that we are hoping will stop, or at least slow down, the spread of the cancer.

A good thing this week is that Anita's sister, Monica, is visiting from Sweden. She has really been helping to make things easier on Anita and has been a lot of fun for the girls as well. Frieda has even announced that she intends to go live with Monica.

Frieda started kindergarten at the International School of Minnesota on Wednesday. She didn't know what her favorite thing on the first day was, but she told us the worst part of the day was having to leave. We are glad that it was fun for her immediately and are really excited for the education she will get.

Thursday, August 24, 2006 8:14 PM CDT

The results of Frieda�s MRI and ultrasound were very good on Thursday. There is no change to her kidney except for its growth. It is now slightly larger than normal for Frieda�s age, which the oncologist said is expected because it is compensating for the absence of the other kidney. It is particularly good in Frieda�s case being that she even had some of her remaining kidney removed in her last surgery. They also changed Frieda�s follow-up plan to have just ultrasounds every 6 months. Ultrasounds are easier because she won�t have to be sedated, so can eat beforehand.

The process of Frieda�s tests was longer and more difficult than usual. We had decided that Frieda would try having the MRI without sedation. She did a great job of lying still while she was awake in the machine, but her breathing was slightly erratic and prevented them from getting clear pictures. Because of this, we had to leave the MRI room without getting the pictures, then meet with an anesthesiologist and start all over again. This caused her to miss the scheduled time for her ultrasound and, by the time we got everything done, we had been at the hospital over 5 hours. It was unfortunate that they couldn�t get good pictures when she did such a good job. If they were doing any part of her body other than her abdomen, there would have been no problems.

Frieda�s grandma, Anita, also had a CT scan on Thursday to determine if the medication she is taking is helping. If it is, she will be able to take the same medication for 6 more weeks; if it isn�t helping they will find another treatment. She will not get the results of CT scan until next week.

Thursday, August 24, 2006 8:09 PM CDT

The results of Frieda�s MRI and ultrasound were very good on Thursday. There is no change to her kidney except for its growth. It is now slightly larger than normal for Frieda�s age, which the oncologist said is expected because it is compensating for the absence of the other kidney. It is particularly good in Frieda�s case being that she even had some of her remaining kidney removed in her last surgery. They also changed Frieda�s follow-up plan today to have just ultrasounds every 6 months. Ultrasounds are easier because she won�t have to be sedated, so can eat beforehand.

The process of Frieda�s tests was longer and more difficult than usual. We had decided that Frieda would try having the MRI without sedation. She did a great job of lying still while she was awake in the machine, but her breathing was slightly erratic and prevented them from getting clear pictures. Because of this, we had to leave the MRI room without getting the pictures, then meet with an anesthesiologist and start all over again. This caused her to miss the scheduled time for her ultrasound and, by the time we got everything done, we had been at the hospital over 5 hours. It was unfortunate that they couldn�t get good pictures when she did such a good job. If they were doing any part of her body other than her abdomen, there would have been no problems.

Frieda�s grandma, Anita, also had a CT scan on Thursday to determine if the medication she is taking is helping. If it is, she will be able to take the same medication for 6 more weeks; if it isn�t helping they will find another treatment. She will not get the results of CT scan until next week.

Tuesday, August 8, 2006 9:31 PM CDT

Frieda's grandma, Anita, saw her oncologist on Monday to discuss the next course of action. He suggested she finish the round of medication that she stopped when the radiation ends. She has enough pills for about 1 more week, then will take a 2 week break from any chemotherapy. On August 24 she will have a CT scan to see if the spots on her liver have grown. If they haven't, she will have another 6 week round of the same chemotherapy drug. If that drug is not working, the oncologist recommends going to a more aggressive combination of 2 drugs that Anita would get \by IV every 3 weeks. Unfortunately, it is likely to make her sick for 2-3 days after each treatment and cause hair loss. It would have a good chance to control the tumor growth for several months before she would have to go on to another medication.

On Tuesday morning, Bob and Anita called the Mayo Clinic to see what the doctor there thinks. He called back very quickly and has a couple of experimintal treatments that he is recommending. One may be the same one that the oncologist mentioned on Monday, but did not recommend doing at this time because she would have to wait for a month before starting. The doctor from the Mayo Clinic will consult with Anita's regular oncologist about the options, so there may be a change of plan after the CT scan.

Bob has also made some calls to some other cancer centers around the country to make sure that we are getting the latest information.

August 24 is also the day of Frieda's next MRI, so it is a very busy medical day for our family. This time we will ask Frieda to be awake for her MRI. She will have headphones to play music and one of her parents in the room with her, but it will still be challenge for her to lie still. They will be ready with the sedation if it is too difficult for her.

Tuesday, August 1, 2006 7:54 PM CDT

Saturday, July 29 was the 4th annual Family and Friends of Frieda Fun Fundraising Picnic. It was the best one yet for Frieda because several of her friends from pre-school came. It was very hot, but many of the girls kept cool by pouring water on each other. Our turnout was about the same as the previous years and we expect to raise a similar amount for Children's Hospital. We think we'll have a total of the amount raised within a month and will post it here. We also hope to have some pictures to post after getting our film developed.

Unfortunately, Grandpa Sam and Grandma Betty had to go back home to Arizona a couple of days after the picnic. Both Frieda and Molly had a great time seeing a lot of their grandma while she spent the summer at Aunt Karen and Uncle Isaac's. I think Grandma had just as much fun.

The girls' local Grandma, Anita, finishes her radiation therapy this week. The radiation has made her tired, so it will be good to have it done; plus, she then can get on with the next step in her treatment. Monday, August 7, is when we meet with the oncologist to decide what is best to do.

Saturday, July 22, 2006 8:32 PM CDT

We got some bad news this week when Frieda's grandma, Anita, noticed she had a lump on her belly. She went in for a test and they believe that it is more melanoma and they also found some cancer on her liver. Anita will complete her current radiation treatment, which has about 2 more weeks to go. When she is done with radiation, she will stop taking the chemotherapy pill she is currently using and then meet with the oncologist on August 7 to discuss alternate treatments. He has some ideas on some other drugs that may better treat the cancer cells on her liver.

Meanwhile, the girls are enjoying their summer. They both got to march in a neighborhood 4th of July parade that some friends hosted. Last weekend, the family of one of Frieda's pre-school friends invited us to a lake for water play. There were about 6 kids from Frieda's class with their brothers, sisters, and parents plus two of Frieda's teachers. Frieda got to be pulled behind a speedboat on a towable tube and really liked it, although she thought it should go faster. Molly had a great time playing in a large round floating toy that had a section in which she could sit and splash water. We were there for hours and the girls still did not want to leave.

Next Saturday, July 29, is Frieda's 4th annual picnic. She is especially excited for it this year because she invited her pre-school friends. We are looking forward to a good time.

Friday, July 21, 2006 8:23 PM CDT

We got some bad news this week when Frieda's grandma, Anita, noticed she had a lump on her belly. She went in for a test and they believe that it is more melanoma and they also found some more cancer on her liver. Anita will complete her current radiation treatment, which has about 2 more weeks to go. When she is done with radiation, she will stop taking the chemotherapy pill she is currently using and then meet with the oncologist on August 7 to discuss alternate treatments. He has some ideas on some other drugs that may better treat the cancer cells on her liver.

Meanwhile, the girls are enjoying their summer. They both got to march in a neighborhood 4th of July parade that some friends hosted. Last weekend, the family of one of Frieda's pre-school friends invited us to a lake for water play. There were about 6 kids from Frieda's class with their brothers, sisters, and parents plus two of Frieda's teachers. Frieda got to be pulled behind a speedboat on an air mattress and really like it, although she thought it should go faster. Molly had a great time playing in a large round floating toy that had a section in which she could sit and splash water. We were there for hours and the girls still did not want to leave.

Next Saturday, July 29, is Frieda's 4th annual picnic. She is especially excited for it this year because she invited her pre-school friends. We are looking forward to a good time.

Sunday, July 2, 2006 10:10 PM CDT

Frieda's grandma, Anita, started her radiation treatments on Wednesday, June 28. It was actually supposed to start on June 27, but she got a call as they pulled into the clinic that the equipment was not working, so it was delayed one day. On Thursday, the 2nd day of treatment, they ran into the oncologist and asked about the chemotherapy drug recommended by the Mayo Clinic. On Friday, she got a prescription for the drug, Temodar, and started taking it Friday night.

It looks like going through the treatment will be difficult because Anita has already felt sick to her stomach. The oncologist felt that Temodar would not cause any side effects beyond what is cause by radiation, which is primarily nausea. She has approximately 5 weeks of radiation coming up (25 more sessions). Temodar is a pill that Anita takes on her own. She is scheduled to take it 6 weeks, then have 2 weeks off, then another 6 weeks. At that point they will evaluate whether to continue or to change to a different treatment.

Anita and Bob both got to come and see Frieda's t-ball game last week. They also took her to Pippi Longstocking at the Children's Theater last month. Frieda really enjoys when they can come to her things, as does Molly. This month, Frieda is having fun with her other grandparents in town as well. The last Saturday of this month, July 29, will be the 4th Annual Family and Friends of Frieda Fun Family Fundraiser picnic for Children's Hospital. Frieda is more excited than ever for it this year because she is inviting friends from school. Invitations will be going out soon.

Friday, June 23, 2006 6:24 AM CDT

I have just a quick update this week to let people know that Frieda's Grandma Anita starts her radiation therapy on Tuesday, June 27. She will have 28 doses of radiation going daily Monday - Friday for almost 6 weeks. The radiation therapist said she might be able to start her chemotherapy drug during radiation, so they will check with the oncologist to see what he thinks of that.

Monday, June 19, 2006 8:09 PM CDT

Frieda's grandma, Anita, visited the Mayo Clinic this week and had several tests done. The doctor she met with has worked with rectal melanoma before and recommended starting the radiation therapy suggested by the doctors in Minneapolis as soon as possible. She has an appointment on Wednesday, June 21, to get set up for the treatments. She will have 28 doses of radiation, going Monday - Friday every week.

The Mayo's doctor also said there is a chemotherapy pill that he would recommend doing doing after radiation is complete. He knows the oncologist Anita is working with in Minneapolis, so will discuss that treatment with him. Hopefully, the doctors will come to an agreement on the best medication by the time she is done with radiation. If she does take the chemotherapy pill, it is possible she would also do an immune therapy (GMCSF)afterwards.

Frieda and Molly finished their year at pre-school/day care last week. Frieda's Ready-4-K class had a graduation ceremony at the park by our house on Tuesday with lots of food and many of her friends. They will both continue at Fraser full-time this summer and Molly will stay in her same toddler class next school year. Frieda starts kindergarten at International School on August 30.

Monday, June 19, 2006 10:29 AM CDT

Frieda's grandma, Anita, visited the Mayo Clinic this week and had several tests done. The doctor she met with has worked with rectal melanoma before and recommended starting the radiation therapy suggested by the doctors in Minneapolis as soon as possible. She has an appointment on Wednesday, June 28, to get set up for the treatments. She will have 28 doses of radiation, going Monday - Friday every week.

The Mayo's doctor also said there is a chemotherapy pill that he would recommend doing doing after radiation is complete. He knows the oncologist Anita is working with in Minneapolis, so will discuss that treatment with him. Hopefully, the doctors will come to an agreement on the best medication by the time she is done with radiation. If she does take the chemotherapy pill, it is possible she would also do an immune therapy (GMCSF)afterwards.

Frieda and Molly finished their year at pre-school/day care last week. Frieda's Ready-4-K class had a graduation ceremony at the park by our house on Tuesday with lots of food and many of her friends. They will both continue at Fraser full-time this summer and Molly will stay in her same toddler class next school year. Frieda starts kindergarten at International School on August 30.

Monday, June 19, 2006 10:26 AM CDT

Frieda's grandma, Anita, visited the Mayo Clinic this week and had several tests done. The doctor she met with has worked with rectal melanoma before and recommended starting the radiation therapy suggested by the doctors in Minneapolis as soon as possible. She has an appointment on Wednesday, June 21, to get set up for the treatments. She will have 28 doses of radiation, going Monday - Friday every week.

The Mayo's doctor also said there is a chemotherapy pill that he would recommend doing doing after radiation is complete. He knows the oncologist Anita is working with in Minneapolis, so will discuss that treatment with him. Hopefully, the doctors will come to an agreement on the best medication by the time she is done with radiation. If she does take the chemotherapy pill, it is likely she would also do the immune therapy afterwards.

Frieda and Molly finished their year at pre-school/day care last week. Frieda's Ready-4-K class had a graduation ceremony at the park by our house on Tuesday with lots of food and many of her friends. They will both continue at Fraser full-time this summer and Molly will stay in her same toddler class next school year. Frieda starts kindergarten at International School on August 30.

Saturday, June 17, 2006 8:16 PM CDT

Frieda's grandma, Anita, visited the Mayo Clinic this week and had several tests done. The doctor she met with has worked with rectal melanoma before and recommended starting the radiation therapy suggested by the doctors in Minneapolis as soon as possible. She has an appointment on Wednesday, June 28, to get set up for the treatments. She will have 28 doses of radiation, going Monday - Friday every week.

The Mayo's doctor also said there is a chemotherapy pill that he would recommend doing doing after radiation is complete. He knows the oncologist Anita is working with in Minneapolis, so will discuss that treatment with him. Hopefully, the doctors will come to an agreement on the best medication by the time she is done with radiation. If she does take the chemotherapy pill, it is likely she would also do the immune therapy afterwards.

Frieda and Molly finished their year at pre-school/day care last week. Frieda's Ready-4-K class had a graduation ceremony at the park by our house on Tuesday with lots of food and many of her friends. They will both continue at Fraser full-time this summer and Molly will stay in her same toddler class next school year. Frieda starts kindergarten at International School on August 30.

Sunday, June 11, 2006 8:58 PM CDT

Frieda's grandma, Anita, will be visiting the Mayo clinic this week. She has decided to get their thoughts before starting radiation. We don't expect that they will have any ideas that would not involve radiation, but since she was able to get in without delaying radiation, she will get their opinion first.

Her appointment is on Wednesday morning; it will involve many tests as well as a consultation. They don't know how long it will take, but are prepared to be there all day and go back Thursday, if necessary. After getting the information, she and Bob will decide what plan to follow. We still expect radiation treatment to start before the end of June. Radation will take about 5 1/2 weeks going every day Monday - Friday.

I will plan on upating with what the Mayo said in about a week.

Sunday, June 4, 2006 9:01 PM CDT

Frieda's grandma, Anita, met last week with both her surgeon and an oncologist that specializes in melanoma. It looks like she is about 2 weeks away from the next step in her treatment, which will be a month of radiation for 5 days a week.

The oncologist went over several options for treatment after radiation. Because her cancer has a high rate of recurrence, the doctor recommends a fairly agressive treatment. Melanoma doesn't respond well to chemotherapy, so the drugs would be ones that boost her immune system. He is recommending a medication he called GMCSF (I think), which she would take for 2 weeks, then have 2 weeks off for up to 3 years. Anita would have to go into the oncology office for all treatments.

There is a drug that could be taken for a shorter time, but it is much more difficult to take, making people feel like they have the flu. The doctor also recommended that Anita check with the Mayo Clinic for additional options and will check himself to see if she is eligibile for an experimental treatment that the Mayo will be doing.

Whatever medication is used, it will not start until a month or two after radiation, so Anita and Bob will have plenty of time to consider the options. They do plan on speaking with her surgeon this week and trying to schedule a visit to the Mayo.

Monday, May 29, 2006 9:37 PM CDT

Frieda's grandma, Anita, is continuing to recover well from her surgery. We visited her today and wouldn't have been able to tell by looking her that anything had happened. She and Bob are now able to get out of the house and are back to a rather active schedule. She really seems close to fully healed from the surgery. They have had a lot of great help from their friends that have helped around the house, with meals, or as emotional support.

There isn't any update to her treatment schedule yet. The surgeon will determine when she is ready to start radiation and when Anita saw him last week, he thought it would still be a couple of weeks before she is ready for radiation. She sees him again this Wednesday and also has an appointment with an oncologist with expertise in melanoma on Thursday. We are hoping to have a better idea of the start date for radiation by next weekend.

We had conferences with both Frieda's and Molly's teachers this week. Both girls seem to be excelling in pre-school (actually day care in Molly's case). Frieda's teacher feels that she is ready for Kindergarten in every way and commented on how well she interacts with the other kids. For Molly, they just look at her development relevant to expectations for her age (1 1/2 years). She is doing quite well on everything they look at, especially her vocabulary. They say they want kids to have 50 words by their 2nd birthday and she has way more than that.

Sunday, May 21, 2006 8:07 PM CDT

We visited Grandma at her house today and she met us outside. Anita's recovery is going so well that she was able to take just one pill for pain today and is back to her normal sleeping schedule. She really seems like she is back to her normal self, with being active around the house and having a really good time with Frieda and Molly.

Anita has two appointments this week. On Monday, she will have a follow-up with the stoma nurse. She is already adjusted to living with the stoma, or colostomy, and has found that it is not too much trouble. Tuesday, she sees the surgeon for the first time since leaving the hospital and will try to get some clarity on the follow-up treatment. Based on her recovery, Anita will probably be ready to start radiation within the next 2 weeks, but it has not yet been scheduled. I will try to update this site at least weekly throughout the treatment.

Frieda completed her year of gymnastics with Richfield Gymnastics Club spring show last Wednesday, May 17. We were very proud of how she did in going through the routine of the vault, balance beam, and floor exercise. She has decided to continue with gymnastics and registered for the summer session that starts in mid-June. Hopefully, one of our pictures from the spring show will be good enough to post on this site.

Saturday, May 13, 2006 8:11 PM CDT

Grandma's at home! Anita was released from the hospital on Saturday morning and her afternoon nap at home was the best sleep she has had since the surgery. We are all very happy that she is out of the hospital and believe that being at home will help her recovery. They gave her subscriptions for pain, nausea, and acid reflux, but that is all that she is taking now. Overall, the recovery is going quite well.

She has to call on Monday to make an appointment to meet the melanoma expert of the oncology group. As she recovers over the next few weeks, she will also have to see the stoma nurse, gynecologist, and surgeon (to remover her surgical staples). When she is fully recovered, probably 2-3 weeks from now, Anita will start her radiation treatments.

Back at Frieda's house, Molly just completed her first week of going to day care 5 days. It really tired her out since she doesn't get any long naps; maybe she will have to go to an earlier bed time. Frieda finished another session of gymnastics on Saturday. She will participate in the Richfield Gymnastics Club spring show on Wednesday. We are looking forward to seeing her progress.

Once we get some clarity on the treatment plan for Anita, we will post another update.

Wednesday, May 10, 2006 9:42 PM CDT

We had a meeting with the oncologist on Wednesday to discuss Anita's (Frieda's grandma) treatment plan. The preliminary plan is to start radiation in the surgery area once she is recovered enough to begin. That could be as soon as 2-3 weeks after leaving the hospital. She would have a radiation treatment every Monday - Friday for approximately one month. Each treatment will consist of radiating the area for just a few seconds and will be focused on the area where the everything was removed in the surgery, so the risk of any adverse effects on other organs is minimal.

After radiation (the exact timing is not yet determined), Anita will be given a medication called interferon. This is not actually chemotherapy, but immunotherapy. It gives a boost to the immune system to help it fight any traces of melanoma. She will also have this treatment every Monday - Friday for about a month. After that, she will get a smaller dose 3 times a week for a few more weeks. The first month with the larger doses will be administered at the oncology clinic. When the dosage is reduced, it can be administered with a small poke that she may be able to do at home.

This treatment plan is not necessarily the final decision, but we can probably count on treatment lasting through the summer. The oncologist is going to look into what recent experimental treatments there have been that may be useful and also will arrange for Anita to meet with his group's melanoma expert, who will be more involved in the actual treatment. We have until Anita is fully recovered from the surgery before finalizing the details of treatment.

Anita continues to recover well; she has been walking and sitting up quite a bit and is now on a soft food diet. We don't have a date for leaving the hospital yet, but there is no hurry after such a major surgery. Please continue to watch this site and we will update as things progress and the treatment plan is clarified.

Monday, May 8, 2006 9:31 PM CDT

We got the pathology report on Frieda's grandma, Anita, on Monday. They took out 13 lymph nodes in the surgery and 2 of them showed microscopic cancer cells. There were also some microscopic cancer cells near where the tumor was. This means there will be some follow-up treatment, but we don't know what it will be yet. The hospital's head oncologist will be meeting with Anita later this week to discuss what should be done. The surgeon stressed that this is neither good nor bad; it probably would have been a good idea to follow up with treatment even if they found no traces at all. When we have the plan, we will post it on this site so everyone can stay updated. Regardless of what needs to be done, there will be no treatment until she is fully healed, which will probably be in June.

Otherwise, Anita's recovery is continuing to progress. The stoma bag that she now wears for her bowels started to work, so they will start her on a liquid diet on Tuesday. From the liquid diet, she will progress to soft foods and a regular diet before leaving the hospital. The surgeon also believes that the epidural will be removed on Tuesday. She will switch to a pump or pills if/when she is ready to take them. Our current guess is that she will be in the hospital at least until the weekend.

I also wanted to add a little more about Frieda's visit to the doctor last Friday. Frieda's cancer has history of high recurrence, but her oncologist talked about how Frieda is not following the normal pattern of a Wilms patient with recurrence. They frequently see spots popping up on the kidney shortly after treatment, but Frieda has had none in 2 1/2 years. This is certainly no guarantee that she will not have a recurrence, but it is encouraging to hear. The oncologist also felt Molly's tummy and could feel no signs of tumor. We were glad that she checked; Molly is almost the age Frieda was at diagnosis so, for us, this is a good time to have her checked by an expert.

Friday, May 5, 2006 9:51 PM CDT

Frieda had another good MRI on Friday � there was no change from the last one. The radiology staff is now encouraging Frieda to try the MRI without sedation. They showed her a video about being in the MRI, but Frieda decided that she wanted to wait until next time to try it. She would still need a poke for drawing blood, but if she can stay awake she could at least eat before the appointment. We will be talking to her about it before her next MRI in 4 months, then will try it with her awake. If she is afraid on the MRI, everything will be ready to give her the anesthesia.

We also decided that next time we will do an ultrasound as well as an MRI. Her nephrologist wanted an ultrasound this year plus one more before we see him again in 2008 so he can judge the kidney�s growth. The oncologist thinks that Frieda�s kidney is doing so well that she may be willing to switch to ultrasounds rather than MRI�s after that. Ultrasounds will be much easier because we know that Frieda can be awake for that and it doesn�t take as long.

The other news this week has also been very good. After successful surgery for her rectal melanoma on Wednesday, Frieda�s grandma, Anita, is recovering very well. She is feeling much better than we expected and has already been out of bed and walking around. We still expect Anita will be in the hospital until about May 10 and the pathology results are expected on Monday. We will keep this site updated as things progress.

Wednesday, May 3, 2006 11:11 PM CDT

Frieda's grandma, Anita, had successful cancer surgery on Wednesday. Anita had recently been diagnosed with rectal melanoma and had numerous tests over the last couple of weeks, with none of them showing and indications that it had spread anywhere else.

Wednesday's surgery was to remove the rectum. The surgeon said everything he saw looked good - there is no sign that it had spread to any other organs and lymph nodes outside of the rectum looked good. He ended up removing her rectum and uterus plus some lymph notes that will be tested. Once the pathology comes back on the lymph nodes, they will decide if any further treatment is needed.

We expect her to be in the hospital for about 1 week and then will have some more recovery time at home. If everything goes well, she will be back to normal life by summer.

Frieda's MRI is Friday, so we will post results of that later this week. We will also keep this site updated with any additonal information on Anita's progress.

Tuesday, April 11, 2006 9:49 PM CDT

Frieda�s next MRI is scheduled for Friday, May 5. She is currently having MRIs every 4 months and that will probably be the schedule until she is 7.

Frieda and Molly had a good winter. They both took swimming lessons in February and March. Frieda is getting comfortable in holding on to the edge of the pool on her own and learned some new strokes. Molly went into the pool with Daddy and really enjoyed herself, although she tended to get tired and cold by the end of the class. Frieda has now been doing gymnastics for about a year. We have seen a lot of improvement in the bars and beams this year, so are looking forward to the spring show that they have in May.

Mommy started working part-time in March, so Molly now spends 2 full days a week at day care and gets Mondays with FarMor and FarFar (grandma and grandpa). Both Molly and her grandparents enjoy the arrangement, which is expected to last until mid-June, when Molly starts going to day care 5 days a week.

Frieda is very excited to start Kindergarten in the fall. She will be attending the International School of Minnesota. Part of their curriculum includes learning a foreign language � either French or Spanish - for all grades. Frieda has been eager to learn Spanish for a while now and she really enjoyed her school day visit in a class with kids her age. She also saw a performance of the Sound of Music there and was very excited to meet the �big kids� in the cast afterwards. The school has an excellent academic reputation and small class sizes.

We will post an update with the results of Frieda�s MRI shortly after the appointment. There are new pictures on the photo page.

Friday, February 3, 2006 9:16 PM CST

The big excitement recently is Frieda and Molly have a new cousin! Aunt Karen and Uncle Isaac had a baby boy, Zeke, on January 19th. Frieda is thrilled and Molly happily points and says �baby� every time she sees him. We have posted a picture of the girls with Zeke.

Frieda saw her nephrologist (kidney doctor) on January 26. All the tests that measure kidney function came out very well. The doctor was very pleased and wants to see her again in another two years. He would like Frieda to have an ultrasound of her kidney before the next visit so he can see how much her kidney has grown.

Frieda�s next MRI will be in May. We will plan on posting the date once it is scheduled.

Thursday, January 12, 2006 9:19 PM CST

Frieda had another clear scan on Thursday! It took longer than usual, so it was difficult for us to wait, but the important thing is there were no changes from the last scan. The next MRI will be in May. In two weeks, on January 26, Frieda will see her nephrologist. This is just a routine follow-up. She last saw them in January 2004 and they said they didn�t need to see her for two years; it�s hard to believe those 2 years have passed so quickly.

The family had a good holiday season. The highlight for Frieda was a trip to Arizona to visit Grandpa Sam and Grandma Betty. It wasn�t warm enough for her to swim, but she and Molly had a great time playing with Grandpa and Grandma, going to a railroad park, and visiting the zoo. The Phoenix zoo has an annual holiday light show that we visited and it had a talking giraffe that said �Hello� to Frieda and Molly.

We don�t expect to have any new information after the visit with the nephrologist but we�ll have another update at the end of the month with some new pictures.

Monday, December 5, 2005 9:31 PM CST

Frieda's next MRI is scheduled for January 12. She also has an appointment with the nephrologist on January 26 - it's hard to believe two years have passed since her last appointment with him.

Frieda is now 5 years old and celebrated her birthday with several of her friends at Chuck-E-Cheeze. We also had a good Halloween and Thanksgiving. We have posted new pictures from Halloween and both of the girls' birthdays.

Please enjoy your holiday season and look for our next update after Frieda's MRI.

Tuesday, October 25, 2005 9:59 PM CDT

I�m sorry that we haven�t updated this since Molly�s ultrasound, but life has been very busy. The ultrasound came out well, showing nothing abnormal. We don�t yet know if the doctors will suggest that she have another one and will be asking the oncologist the next time Frieda sees her in January.

Molly had her first birthday on October 2 and really seemed to enjoy her party. She had a big smile when opening her cards and presents (actually when Frieda opened them for her) and is continually playing with them, as well as other things in the house. This week Molly has started to walk and did a lot of it in her ECFE class.

Frieda is in a Ready-for-K program at her pre-school now. She goes 5 days a week and really seems to be becoming a class leader. She loves it so much she has even asked to sleep at school. We can�t believe how much art comes home with her every day. This fall, Frieda played soccer but didn�t enjoy it as much T-ball or gymnastics, which she continues to do. The next thing she will be getting into is swimming, which doesn�t start until January. Frieda has taken swimming lessons before, but seems more eager this year so will probably learn some new things. We also got a total from the July 31 fundraising picnic � we raised nearly $3,000 for Children�s Hospital this year!

The rest of the year looks quite busy for us. November has Nickie�s Bark Mitzvah, Mommy�s birthday, and Frieda�s 5th birthday! Then we are expecting a visit from Grandpa Sam and Grandma Betty for Thanksgiving. We are also hoping to take our annual trip to Arizona in the next few months and Frieda�s next MRI will be the second week in January. We will post the date of it after it is scheduled.

Friday, September 2, 2005 9:59 PM CDT

Frieda had another clear MRI on Friday (9/2); it was the quickest one yet. The MRI took less than 30 minutes instead of the usual 45 minutes � we took this as a sign they didn�t see anything unusual. Sure enough, we got the good news just a few minutes after arriving at the oncology clinic. We were home at least an hour earlier than normal for an MRI day. The next MRI will be in 4 months. Molly will have an ultrasound on October 3rd to make sure her kidneys are still developing normally.

Frieda did not have school this past week, so we took a trip to Boyd Lodge in the Brainerd lakes area Saturday � Wednesday. Farmor, Farfar, Uncle Steve, and Satchel all were there as well and we had a really good time. Frieda especially enjoyed playing at the playgrounds, having her face painted, making a tie-dye t-shirt, and swimming by herself (using Styrofoam noodles). Molly also got in the swimming pool and looked very happy. Another highlight was going to Moondance Ranch, where we got to walk around with deer, goats, sheep, and several other types of animals as well as feed them. Frieda also went on a pony ride there.

Starting after Labor Day, Frieda will go to pre-school 5 days a week. She will be in a Ready-For-K class to prepare her for starting Kindergarten next year. She is currently playing soccer through the YMCA and is looking forward to gymnastics beginning again in a few weeks.

We hope to go to the State Fair this weekend so Frieda can show Molly the animals, rides, and all of the other great sights!

Monday, August 1, 2005 9:46 PM CDT

We held Frieda�s third annual fundraising picnic for Children�s Hospital on July 31. It was our best turnout yet with over sixty people. Everyone seemed to have a very good time, especially the kids who spent almost the whole time at the playground. Frieda enjoyed it so much that she wanted to do it again the next day, but we�ll wait until next summer. We�ll post the total amount raised once Children�s Foundation processes all of the donations.

Overall, the girls have been having a good summer. Frieda is now in beginner level 1 of gymnastics and is also playing t-ball. Daddy is attempting to coach, with limited success, but the team seems to be having fun. Frieda is also still going to pre-school at Fraser three days a week and is scheduled to start going five days in the fall. Molly is now very mobile, she is crawling all around the house and standing up (by holding onto something) whenever she can. It probably won�t be long until she starts walking.

Frieda�s next MRI has been scheduled for September 2. The doctor has said that we can now go 4 months between MRI�s, so we think that is progress. Molly will be having another ultrasound around her first birthday, which is October 2.

Tuesday, May 3, 2005 9:52 PM CDT

Frieda had yet another clear MRI today! She did a great job getting her �poke� even though the nurse was a �boy.� We had previously seen this nurse during her hospitalization in December 2002 when she had reached the point where she really didn�t want any hospital staff touching her � let alone �boy� nurses. At that time, in order to take her blood pressure he had to find extra long cords for the machine and stand in the hallway outside her room. This time she didn�t even cry during the poke!

We are tentatively planning to host the third annual Fun Family Fundraiser picnic for Children�s Hospital on Sunday, July 31.

Frieda�s next MRI will be in August. We�ll post the date once it has been scheduled.

Saturday, April 2, 2005 9:31 PM CST

Once again, it has taken us a long time to get around to updating this site. This is because we manage to keep so busy with a normal life. Frieda took swimming lessons this winter � the first time she went in a pool without Mommy or Daddy. When the class started Daddy had to go in the pool to get her to go in, but by the end of 8 weeks of lessons, she was jumping in to the teacher and enthusiastically trying everything. It was great to see how much progress she made.

Now Frieda is taking gymnastics through the Richfield Gymnastics Club. She was anxious about starting something new, but once she went to the first class she was doing everything and having a great time. She even wanted to fly home from vacation early so she wouldn�t miss a class. (Fortunately, we could do a make-up class instead.)

Molly is now six months old. She smiles easily and frequently laughs at what her big sister is doing. She has started on rice and oat cereal, preferring to eat at the table when the family is having a meal and hold the spoon herself. The big news on Molly is that over the last week she has had two teeth peek through.

In March, we took our annual trip to Arizona to visit Grandpa Sam and Grandma Betty. Frieda had a great time swimming, riding the train at McCormick Ranch Railroad Park, baking with Grandma, miniature golfing, visiting butterflies at the botanical garden, and going to the zoo. The week was very busy with activities for Frieda. It was Molly�s first time on a plane and she did very well.

Frieda�s next MRI has been scheduled for May 3 and we will post an update that week.

Tuesday, February 1, 2005 10:01 PM CST

Hurray! Frieda had another set of clear scans on Tuesday�s MRI. There has been no change to her kidney, other than its size, since her last surgery in December 2003. Molly�s ultrasound showed normal kidneys. She will be checked again when she is one year old.

Both girls did great with the tests and examinations. We will update with more info when we have a date for Frieda�s next MRI in May.

Tuesday, January 4, 2005 9:51 PM CST

Happy New Year!!

For the first time since 2001 we had a normal December - no surgeries! We managed to complete 2004 without any surgeries or any complications. It was December 2002 that Frieda�s left kidney was removed and she was released from the hospital on December 23. However, we had to go back for radiation on both Chrismas Eve and Christmas Day. Last year, we were surprised when they decided it was best to remove the remaining spots on her right kidney in early December. Frieda had a great holiday season this year. She was very excited to open her presents and has had a great time playing with her new things. Frieda was also very excited to share Hanukkah and Christmas with Molly this year. She took it upon herself to open all of Molly�s gifts since Molly couldn�t do it.

Frieda also had a birthday since our last update; she turned 4 years old on November 14. We had a Strawberry Shortcake birthday party at our house for Frieda, 7 of her girlfriends, and two younger boys (as well as three newborns). It went quite well and all the kids seemed to have a lot of fun. Luckily, it was warm enough for the kids to play at the school playground across the street.

Frieda still loves being a big sister. She is very anxious for Molly to get bigger so she can play with her more. Frieda still sometimes gets a bit too excited around Molly but is getting better about being gentile around a little baby. Molly is three months old, smiling more and more often, and starting to laugh. She always has a big smile for Frieda (except when Frieda decides to cover her nose�)

Frieda�s next MRI is scheduled for February 1. Molly will have an ultrasound of her kidneys the same morning to check that they are developing properly. As a genetic cause was not found for Frieda�s Wilms, there is no reason to believe Molly will have Wilms - the ultrasound is just a precaution.

Wednesday, November 3, 2004 10:45 PM CST

Everything went well with Frieda�s MRI on November 2. Her tests all came out well and there is no change in her kidney from the last MRI. This means that Frieda gets to have a December with no surgeries! Each of the last two years she has had a surgery in December, so we will really enjoy this holiday season.

Frieda�s next MRI will be in early February and we will try to schedule an ultrasound of Molly�s kidneys on the same day. There is really no reason to believe that Molly will develop Wilms tumor. After Frieda was diagnosed, we submitted blood samples for tests to determine if there was a genetic basis for Frieda�s Wilms. The tests all came back negative so there does not seem to be any genetic factors that would indicate our other children would be likely to have Wilms tumor. Frieda�s Oncologist has also contacted the National Wilms Tumor Study Group in an effort to find out if any of the other 50+ patients with Frieda�s specific Wilms type (Diffuse Hyperplastic Perilobar Nephroblastomatosis) have siblings with Wilms. She did not receive a response back from them which she takes to mean that they do not have the information. We do know that in the one case Frieda�s Oncologist had 20 years ago, the patient had a sibling who did not have Wilms. However, with family history typically an indicator for likelihood of disease, we will be monitoring Molly primarily for our own peace of mind.

After a month, Frieda shows no signs of tiring of her new role as a big sister. She continues to want to be with Molly as much as possible and to help with everything. On Sunday, she did very well in her first chance to help feed Molly with a bottle. We try to explain how it will be a while before Molly will do much other than sleep and eat, but it does not lessen Frieda�s enthusiasm.

Friday, October 15, 2004 9:02 PM CDT

On October 2, Frieda got the baby sister that she has been wanting for quite a while. Molly Anita Liston was born at 2:34 am that day and weighed in at 7 lbs 6 oz. Everything went very well and we�re all adjusting to getting less sleep.

Frieda is very excited to have a baby in the house and wants to help with everything. Unfortunately, with a baby that spends all of its time either eating or sleeping there is not much that Frieda can do. She does want to hold her any time that Molly is awake and wants to be close whenever someone else is holding her. Frieda enjoys picking out clothes for Molly to wear and helping with bath time.

Frieda�s next MRI is scheduled for November 2nd. As a precaution, Molly�s kidneys will be monitored by ultrasound on a regular basis starting when she is about four months old.

Tuesday, September 21, 2004 9:42 PM CDT

We have been meaning to update this web site for several weeks now, but the time keeps slipping away. Of course, this means that Frieda is doing quite well and has been enjoying the end of the summer.

A lot has happened since our last posting. One of the big things is that Frieda got to be a flower girl in her Aunt Karen�s wedding. We were very proud of how well Frieda walked down the aisle with all of those people watching. She practiced numerous times beforehand and did an excellent job, giggling most of the way to her seat. Frieda also proved to be very photogenic and did quite well posing for all of the pictures. The above picture of our family is from the wedding; Mara was matron of honor.

Then, on August 21, we held our 2nd annual picnic to raise money for Children�s Hospital. The turnout was good and we raised approximately $2,000. One of the highlights was seeing the kids playing together in the park. Later in August we went on a vacation to Lake Dodo in Canyon, Minnesota (between Duluth & the Iron Range in northern Minnesota) with Farmor and Farfar, Uncle Steve and Aunt Lynn, and Frieda�s cousin Satchel. Although the weather wasn�t very cooperative, we all had a good time. We went to the Duluth Zoo and also Iron World and Frieda got to go out on a canoe and a kayak. The highlight for Frieda was catching her first fish while fishing off the dock, which Satchel had demonstrated for her.

Right after Labor Day, Frieda started the fall year in school with a new teacher and some new friends in her class. The big change for her this year is she now is going three days a week from 9:00 � 3:15, instead of 9:00 � 11:30. She brings a lunch in her Strawberry Shortcake lunch box and has nap time in the afternoon. (She rarely actually naps, but does play quietly while others are napping.)

Frieda is looking forward to finally being a big sister next month! She has been helping sort through her old baby clothes and getting her room ready to share. (She may not be so excited once the baby is here to stay�)

Frieda�s next MRI has been scheduled for November 2nd (election day).

Tuesday, July 27, 2004 9:57 PM CDT

Frieda�s MRI on Tuesday, July 27th, showed no change from April and her blood counts were all normal. This is the best news we could get! We do not need to go back for three months and will probably schedule the next MRI for the first week in November.

Once again, Frieda was an excellent patient. She had decided beforehand that she would bring her favorite stuffed animal, �White Bear�, to squeeze while getting her poke and was braver than ever right up to the poke, even asking to do it a few minutes before the nurse was ready. The MRI is no problem, Frieda even looks forward to getting the �white medicine� (that puts her to sleep) because it makes the room look funny. There were also chest x-rays today and she laid very still for those � they also came out well.

We had a different nurse today and, while Frieda was talking to her, the nurse asked �Is Frieda the one that asked Sylvia that question last time?� Before the last MRI, the nurse asked if we had any questions and Frieda asked �how do kitties eat and play?� Apparently, that nurse told the entire nursing staff about it so they all know what a charming girl Frieda is.

Frieda has been having a good summer. She likes her new class at pre-school, continues to go to play group at a neighborhood park once a week, and has been to the zoo a few times. She loves to talk about when she will be a big sister this fall and even has her own surprisingly reasonable idea for what we should name the baby. We are looking forward to her aunt�s upcoming wedding, in which Frieda will be a flower girl. We are also now planning for another fundraising picnic for Children�s Hospital in honor of Frieda on Saturday, August 21. We will send out more information to those that may be interested once we settle on the specifics.

Tuesday, June 22, 2004 10:09 PM CDT

Things have been going well for the last couple of months. There have been no medical issues with Frieda since her last MRI on April 27. Her next MRI is scheduled for July 27, so we will post the results shortly after that.

Frieda has had a good spring. She finished her first year at Fraser school and this week has made a smooth transition to a new class with a new teacher. At the year-end picnic for Bloomington-Richfield Early Childhood Family Education, Frieda got on a microphone and sang an outstanding rendition of the ABC�s that everyone could hear very clearly. She also had another session of swimming lessons in May; on the last day, she even put her face under water (although not very willingly).

There are some exciting things coming up later this year. Frieda gets to be a flower girl in her Aunt Karen�s wedding this summer. The most exciting thing is that Frieda gets to be a big sister in October! She has been asking to have a baby in the house for over a year now, so had a very large smile when we told her that there will be one in the fall. Frieda has specifically wanted a little sister, and it looks like will be a girl, so she is especially happy. We�ll see if she is as happy when the baby is actually here.

Wednesday, April 28, 2004 10:22 PM CDT

Frieda�s MRI on Tuesday, April 27 showed no change from the previous MRI, which is exactly what we want to see! We are continuing the plan of MRIs every 3 months so the next one will be in late July.

While waiting for the MRI, Frieda was busy charming the staff in radiology. The nurse asked if we had any questions and then asked Frieda if she had any questions. Frieda thought for a minute and then asked �How do kitties eat and play?� Other than right before getting her poke (for her IV), she was a very cheerful patient. (Of course, who is happy to get a poke?)

Since our last update, Frieda had a great time visiting Grandma Betty and Grandpa Sam in Arizona. She got to swim in the pool, visit the zoo, see a butterfly exhibit, and ride a merry-go-round at a train park. She had a lot of fun and tells us that she wants to go back again. Family Gym Time with Daddy ended in April, but she still goes to nursery school three mornings a week. We had a conference with her teacher and enjoyed hearing of the progress she is making. In May, she will have swimming lessons again on Saturday mornings.

Tuesday, March 16, 2004 11:35 AM CST

Frieda has been busy enjoying herself since our last update. She really had fun seeing �Lily�s Purple Plastic Purse� at Children�s Theater and has visited the Children�s Museum a couple of times to see Clifford the Big Red Dog. She continues to enjoy Nursery School three days a week and is back to Family Gym Time with daddy one night a week.

On March 2 � 5, some of Frieda�s relatives visited from Sweden. Daddy�s uncle Erland, cousin Anna-Lena and her husband Anders, and Anna-Lena�s daughter Madeleine with her friend Marcus visited Minneapolis after traveling to New York and Florida. Frieda especially had a great time with her second cousin Madeleine and even mentioned that she would like to have Madeleine as a baby sitter. We have posted some pictures from their visit.

Frieda�s next MRI has been scheduled for April 27th.

Monday, March 15, 2004 10:01 PM CST

Frieda has been busy enjoying herself since our last update. She really enjoyed �Lily�s Purple Plastic Purse� at Children�s Theater and has visited the Children�s Museum a couple of times to see Clifford the Big Red Dog. She continues to enjoy Nursery School three days a week and is back to Family Gym Time with daddy one night a week.

On March 2 � 5, some of Frieda�s relatives visited from Sweden. Daddy�s uncle Erland, cousin Anna-Lena and her husband Anders, and Anna-Lena�s daughter Madeleine with her friend Marcus visited Minneapolis after traveling to New York and Florida. Frieda especially had a great time with her second cousin Madeleine and even mentioned that she would like to have Madeleine as a baby sitter. We have posted some pictures from their visit.

Frieda�s next MRI has been scheduled for April 27th.

Monday, March 15, 2004 9:48 PM CST

Frieda has been busy enjoying herself since our last update. She really enjoyed �Lily�s Purple Plastic Purse� at Children�s Theater and has visited the Children�s Museum a couple of times to see Clifford the Big Red Dog. She continues to enjoy Nursery School three days a week and is back to Family Gym Time with daddy one night a week.

On March 2 � 5, some of Frieda�s relatives visited from Sweden. Daddy�s uncle Erland, cousin Anna-Lena and her husband Anders, and Anna-Lena�s daughter Madeleine with her friend Markus visited Minneapolis after traveling to New York and Florida. Frieda especially had a great time with her second cousin Madeleine and even mentioned that she would like to have Madeleine as a baby sitter. We have posted some pictures from their visit.

Frieda�s next MRI has been scheduled for April 27th.

Tuesday, February 3, 2004 10:06 PM CST

Frieda had her MRI and ultrasound this morning and everything looked great! Her lab work all came back normal and showed that her blood counts and kidney function are fine. She does not have to go back for three months! (What ever will we do with our free time!?!) Her oncologist has decided that the best way to monitor Frieda�s remaining kidney is by MRI. Usually ultrasounds are adequate in cases like hers but, probably due to the nephroblastomatosis and multiple surgeries, MRIs show a much clearer picture of Frieda�s kidney than the ultrasounds. The new schedule is for Frieda to have MRIs every three months for at least the next 12 to 18 months. Then, if no new growths appear, they will think about switching back to ultrasounds.

Frieda also visited with her surgeon and kidney doctor in January. The surgeon told her that if she decides to be a doctor when she grows up, she can work with him. Her kidney doctor wants to see her every two years and has no concerns about her long term health even though she has slightly less than one kidney.

Frieda has been doing a lot of fun things recently. She visited the zoo twice in January, went to a birthday party for one of her friends, had a pizza party at school, and got to dance to the Teddy Bear Band with White Bear, her favorite stuffed animal. In February, she will get to see Lilly�s Purple Plastic Purse at The Children�s Theater Company and is looking forward to an early March visit by some of her relatives from Sweden.

Tuesday, December 30, 2003 9:00 PM CST

Frieda has had two appointments with the doctors since our last update. The first was on Monday, December 22 for a surgery follow-up at the oncology clinic. Everything seemed to be progressing well and her blood counts were normal � including her white blood count which had come down from 21,000 last week to 4,000. This indicated she was most likely recovered from the pneumonia. They will not need to see Frieda again until she has an ultrasound and MRI in early February to get a post-surgery baseline.

The other appointment was a CT scan to look at her lungs on Monday, December 29 to check if the �crud� in her lung had shrunk as expected. It was almost completely resolved with just a slight streak left � exactly what they would expect to see after recovery from pneumonia. If only other things could be cured so easily!

In the last two weeks, Frieda has also enjoyed Chanukah and Christmas. We were quite happy for Frieda to have a normal Christmas this year after having radiation treatments every day the week of Christmas last year. She received lots of fun toys to play with and really enjoyed visiting with many of her relatives, especially her cousins.

Although she does not have to go back to the Oncology clinic until February, Frieda does have two doctors� appointments in January. She sees the surgeon for a post-operative follow-up on January 12th and the kidney doctor on January 29th for a check up.

Wednesday, December 17, 2003 10:30 PM CST

Weve had a busier week than we expected. Frieda had a fever on Sunday and, although it was better on Monday, her oncologist wanted us to bring her in so they could make sure it wasnt related to her surgery. They were fairly sure it was just a virus but they wanted to do blood counts and start a culture to make sure she did not have an infection. All of the tests related to kidney function were fine but she did have an elevated white blood count. After speaking with her surgeon, it was decided that the best thing to do was a CT scan of her kidney to make sure there was no possibility of an infection related to the surgery. They also started her on antibiotics.

We went back in on Tuesday morning for the CT scan. Frieda was not at all thrilled to get yet another poke when they started the IV for the sedation drugs and the CT scan contrast dye. The kidney did not show any areas of concern but the base of one lung showed a little bit of crud, possibly like pneumonia. (Yes, this is a direct quote from the doctor.) The antibiotics they had already prescribed should clear this up and they have scheduled a follow up CT scan for Monday, December 29th to make sure the lung is clear.

The good news we received at the clinic on Monday was that they received the pathology analysis from the National Wilms Tumor Study Group. They agreed with the local pathologists that the three spots removed from her kidney were definitely nephroblastomatosis. However, they said the spot which had started to grow was somewhat different from the other two it had a small area at the center with a slightly different appearance. This is frequently seen in cases such as Friedas of Diffuse Hyperplastic Perilobar Nephroblastomatosis and it is these cells that can develop into Wilms. However, since it had all been removed there is no need for chemotherapy at this point.

Friedas appointment with the kidney doctors has been rescheduled. It was originally supposed to be tomorrow (Dec. 18th) but they decided they did not need to see her right away and, instead of trying to fit her into the already full schedule, her appointment is now on January 29th.

Friedas next appointment is with the oncologist on Monday, December 22 for a surgery follow-up, then we hope to enjoy the holidays before the CT scan the following Monday.

Tuesday, December 9, 2003 10:13 PM CST

We�re home! Frieda was discharged from the hospital immediately after seeing her oncologist this (Tuesday) morning. We are quite happy to be home, although Frieda would have been happy to stay in the hospital�s play room for a while longer. We believe it is important to get her back to her normal routine and especially on a normal, undisturbed sleep schedule. Mom and Dad were especially anxious to get back to normal life.

Frieda will have several follow-up appointments over the next few months. The nephrologists (kidney doctors) were not notified of her surgery until Monday so did not have a chance to see her when she was in the hospital. Her appointment with them is Thursday, December 18. Frieda also will need to see the surgeons in about four weeks so he can check her incision. It appeared to be healing fine; this is just a routine post-surgery follow-up.

As far as the long term plan with the oncologist, Frieda has an appointment on December 22nd for blood tests and a post-operative follow up. On February 3rd, Frieda will have an ultrasound and an MRI to obtain post-surgery baseline picture of her right kidney. After that, we will return to monitoring with ultrasounds every 2-3 months.

The only side effect of Frieda�s hospital visit that concerns us is the hours she spent watching Strawberry Shortcake videos. Combined with the Strawberry Shortcake balloon Grandpa Sam gave her, we�re probably stuck with a new animated character in our lives.

Monday, December 8, 2003 10:06 PM CST

Frieda had a lot of fun Monday because she spent most of the afternoon in the play room. At first, she was hesitant to get out of bed because she did not feel steady standing up after having an epidural for so long. However, once we were able to temporarily disconnect her from the IV pole she was willing to try. It didn�t take long in the play room before she was walking and playing all around. After a while, she didn�t want to go back to her room.

All indications are that Frieda will go home sometime on Tuesday. She had solid food for supper and there was evidence that her digestive system is fully functioning. We expect to see Frieda�s oncologist on Tuesday morning to discuss the plan for follow-up. Once we meet with her, Frieda will probably be ready to go home (if we can get her out of the play room).

Sunday, December 7, 2003 10:39 PM CST

Things didn�t progress as quickly as we hoped on Sunday. We were hoping Frieda�s epidural would be removed first thing in the morning, but the anesthesiologists were tied up in surgery, so it wasn�t removed until the afternoon and her catheter wasn�t taken out until after 7:00 pm. This means that Frieda did not get out to the playroom today and spent most of the day in her hospital room. She did sit in a wagon to go to the oncology/hematology holiday party. However, once she saw the large crowd, she was not interested in doing anything there and asked to go back to her room. Later, Frieda did some laps around 8th floor in the wagon, but that was all she got out of her room today. With the epidural and the catheter now gone, we expect that Frieda will be able to walk on her own on Monday.

The good news from today is that Frieda had some noticeable sounds from her stomach, indicating that her digestive system is starting to work again. This is an important step towards getting out of the hospital after abdominal surgery. We are hoping that she will be on her feet playing on Monday and also progressing on her eating (she�s only interested in popsicles and juice on her liquid diet). Once she does these things, we may be able to get an idea of when she can go home.

Saturday, December 6, 2003 11:07 PM CST

We had a fairly uneventful day on Saturday as Frieda just continued to recover from the surgery. Frieda was able to leave her hospital room for the first time this afternoon. She sat in a wagon and got to go around the 8th floor of Children�s Hospital and also visit the play area. She is not interested in eating a lot of the food options on the clear liquid diet that she is currently on, but did eat part of a popsicle and a few bites of orange flavored ice today.

Frieda has been congested and running a fever since surgery, but the doctors assure us that this is common for the first 48 hours after surgery. It is also possible that it is related to a fever that her mother had on Thursday. If the fever persists until Sunday, they will probably take a chest x-ray to make sure that it is not related to pneumonia. They also continue to monitor her urine output and are listening for stomach sounds that would indicate her digestive system is working normally, which is needed before she gets to go home. Her stomach does not sound very active, but hopefully it will pick up by the end of the weekend.

We believe that Frieda�s epidural will be removed on Sunday. Once the epidural is out, we will be able to remove some of her monitors as well and then she will be able to walk around so she can play on the floor.

Friday, December 5, 2003 5:57 PM CST

We received the pathology report today and they believe that everything that was removed was nephroblastomatosis rather than Wilms tumor! This was exactly what we wanted to hear. It means that Frieda will not need chemotherapy at this time. It has been forwarded to the National Wilms Tumor Study Group for confirmation, but we will probably not hear back from them for a few weeks.

Frieda is doing very well. She has had a few sips of apple juice as well as a blue popsicle and half a red popsicle. She was out of bed for a few hours today sitting on people�s laps and watching videos. The doctors expect they will remove her epidural in a couple of days and, at that time, she will be able to go enjoy the toys in the play area.

Thursday, December 4, 2003 6:23 PM CST

Frieda�s surgery today was successful. Prior to the operation, the surgeon explained to us that there were four noticeable spots on her kidney that he would be removing. The first three all appeared to be easily accessible and on the outside of the kidney. The fourth, which was the one that had noticeable growth on the MRI, was near some veins and he was not sure if he would be able to get all it. If he could not, he would just take a biopsy from it so we could figure out how to deal with it after getting the pathology report.

Afterwards, he told us that it went much better than expected. There was one lesion that was more difficult than he expected � it went deeper than it appeared and had several tongues growing from it, but he was able to cut it all out. However, when he went to look at the one that was expected to be difficult, he could see nothing. It appears that when he was cutting out the one that was deeper than expected, he was actually taking this one out from the other direction. This meant that it was not difficult to work around the veins and he was able to get all of it. The surgeon did think that it had the appearance of a tumor, but we will not have any indication if it is Wilms or nephroblastomatosis until we get the pathology report, possibly as soon as Friday.

Frieda is very sleepy and seems to be resting comfortably, which is what we want her to do for the night. The one important indicator of kidney health is that she needs to produce urine, which she started doing shortly after the surgery was completed. Her doctors have all been very excited about the amount of urine she has been producing! She has about 90% of her right kidney remaining and it is obviously doing what it�s supposed to.

Tuesday, December 2, 2003 10:40 PM CST

*****Frieda's surgery is actually Thursday, December 4th*****

There was a miscommunication between her doctor and her surgeon - we're just glad they realized it before Thursday! Everything is at the same time: ultrasound at 9:00 am, surgery at 12:15 pm.

Tuesday, November 25, 2003 10:22 PM CST

Frieda�s oncologist has consulted with other pediatric oncologists, surgeons, and the National Wilms Tumor Study Group about what is the best course of action after Frieda�s recent MRI. The consensus is that it is best to perform surgery to remove the spot that has started to grow. The primary reason for immediate surgery is that the surgeons think they can remove the entire spot due to its size and location. (If they are not able to completely remove the spot without disrupting healthy areas of her kidney, they will at least be able to get a very good biopsy.) If we wait until the results of the January MRI and it continues to grow, that might not be an option. Therefore, Frieda will be going back to Children�s Hospital for surgery on Friday, December 5. We have been assured that under no circumstances will they remove her kidney during this surgery. We expect that she will be hospitalized for one week to recover from the abdominal surgery.

Surgery will help reduce the guess work in deciding the course of treatment. Pathologists will be able to analyze the tissue and determine if it is nephroblastomatosis or Wilms. Although the consensus is that it looks like nephroblastomatosis, we would not be able to rule out Wilms as a possibility without a biopsy. These results will also aide us in making decisions in the future if the other spot in her kidney begins to grow or if new spots emerge. Chemotherapy is still a possibility depending on the pathology report.

Of course, the most difficult part is to see Frieda go through another surgery. Surgery is scheduled for 12:30 pm and we expect Frieda will not be happy to wait that long before eating. Fortunately, we will have a busy morning. They will do another Ultrasound at 9:00 am so the surgeons will have a current picture of exactly what the spot looks like. Then we will go to the Oncology clinic so they can fill out the necessary health history forms. We will explain to Frieda that her tummy may hurt when she wakes up and that she will have several tubes connected to her for a few days. We will also tell her that she will be sleeping at the hospital � but Mommy will be there with her all night. It probably will be harder for her to go through this time as she is older and understands more. However, if anyone can handle it, we�re sure Frieda can! Once she can get out of bed (after a few days), Frieda have fun playing in the play room with some of the toys that she probably remembers from previous stays.

We will try to keep this web site updated daily throughout her hospital stay. Also, we have posted new pictures from swimming, Halloween, and her birthday.

Tuesday, November 18, 2003 9:21 PM CST

Frieda had her MRI and ultrasound Monday (11/17). It did not show any new areas of nephroblastomatosis, but one of the spots they have been monitoring has grown � from 1.3 cm back in May to 2.0 cm now. This is not something that requires immediate action but we do need to watch it closely. She will have another MRI on January 6, 2004.

In the meantime, her oncologist is going to have the surgeons look at the MRI and CT scans. She is also going to contact other oncologists to get opinions as to the best way to handle the situation if the spot continues to grow. It is most likely nephroblastomatosis, which sometimes shrinks by itself, but there is always the slight possibility it is Wilms. If the January MRI shows more growth, there are various options ranging from surgery or needle biopsy to chemotherapy or just waiting another 6 weeks to see if it continues to grow.

Unfortunately, there are no clear answers. (We overheard some of the hospital staff discussing how difficult Frieda�s case is while we were waiting for them to start the MRI.) The doctors will have to make some judgment calls. The good news was the lab results - her blood counts are fine and her kidney function is still normal.

Frieda handled the day very well. We arrived at the hospital at 8:00 am and she could not eat or drink anything before the MRI as they needed to sedate her for the procedure. (MRIs take 45 minutes to an hour - adults we know who have had them wish they had been sedated!) They were running a bit behind schedule so she didn�t get to eat breakfast until after 11:00. She was very cooperative with everyone � even when the nurse needed to stick a needle in her hand to start the IV.

There have been good events the past few weeks. The biggest was Frieda�s very happy third birthday. She had been looking forward to it for months and requested a chocolate cake with Dora the Explorer on it. She was so happy with some of the gifts she insisted in telling her doctor and the oncology nurse all about them.

We had a teacher conference at her Nursery School last week. Frieda is doing very well developmentally and continues to really enjoy school. We saw her Pediatrician today for her 3 year check up and she was impressed with how Frieda is doing.

We are looking forward to a visit from Grandma Betty next week and traveling to northern Minnesota for Thanksgiving.

Thursday, October 30, 2003 8:58 PM CST

Happy Halloween!!

Frieda�s MRI and ultrasound have been scheduled for November 17th. She is doing very well and continues to enjoy school. Swimming lessons are over for now. She did manage to blow a few bubbles but didn�t want to put her face in the water. We have only had to deal with �normal� childhood illnesses this month � of course she had pink eye and an ear infection in the same week.

We have posted new pictures including Frieda�s visit to the U.S. Hockey Hall of Fame. (Snoopy was there so she kept asking �but, where is Charlie Brown?�)

We will update the website when we have the results of Frieda�s MRI and ultrasound.

Tuesday, October 7, 2003 9:40 PM CDT

Thank you for helping us raise $2,283 for children�s hospitals & clinics foundation through our fun family picnic & fundraiser!!!

We did have a bit of a scare in September. Frieda went in for an ultrasound on Thursday, September 25th and the Radiologist said that, in addition to the two spots we have been monitoring, there was some new nephroblastomatosis and we should do a CT scan right away. Frieda�s Oncologist wanted to go over everything with one of the other Radiologists who had been more involved with Frieda�s case before making any decisions, so the next day they reviewed her previous ultrasounds and CT scans.

The consensus was that there was nothing new showing in the ultrasound from 9/25. Frieda�s kidney has areas of differing density which can appear to be abnormal cells when viewed from certain angles in an ultrasound. The only real change from the previous ultrasounds is that her kidney has grown - a good thing!! In light of the lack of clarity from the kidney ultrasounds, rather than wait three months as originally planned the Oncologist does want Frieda to have a follow-up ultrasound in 6 weeks and an MRI to get a clearer picture of her kidney. (In most situations they would continue to do CT scans instead of MRIs but the dye used in the CT scans is an added stress on the kidney they would like to avoid.)

Frieda continues to enjoy school. She is now going three days a week � Monday, Wednesday, and Friday. She is also taking swimming lessons with Daddy on Saturday mornings. She does not like to blow bubbles (water keeps getting in her nose!) but otherwise has a great time.

The picture at the top is from our family vacation at the end of August. We spent a week in a cabin on Leech Lake. Frieda enjoyed the cat and dog that roamed the resort.

Friday, August 22, 2003 10:24 PM CDT

On Saturday, August 16, we had a Fun Family Picnic/Fundraiser celebrating Frieda�s successful treatment and raising over $2,200 for Children�s Hospitals and Clinics Foundation. We want to thank everyone that contributed; this event far exceeded the amount that we were hoping for and everyone really seemed to have a good time. We know that Frieda really enjoyed playing at the park with the other kids.

Earlier in August, Frieda had an appointment with the nephrologists (kidney doctors). They think Frieda is doing great and, since she will continue to see her oncologist every three months, they don�t feel the need to see her again.

We have posted new pictures of Frieda�s summer fun, including her picnic.

Friday, July 18, 2003 10:37 PM CDT

Frieda had her first post treatment ultrasound on Wednesday and it showed no change in the size of the two spots on her kidney. There is up to a 40% chance of recurrence in cases like Frieda�s but, in general, if the spots are going to redevelop into nephroblastomatosis it is most likely to occur between six and twelve months after treatment was completed (May 1st). Historically, in those cases that do have a recurrence of Wilms it usually develops within 4 years � but it can happen even 12 years after chemotherapy has ended. Of course, we hope there will never be a recurrence! Frieda will continue to have ultrasounds every three months for now; the next one will be in October and they will also draw blood to monitor her blood counts and kidney function at that time.

Also this week, we received the final results from the WT1 (Wilms Tumor 1) genetic test that was done in England. The remaining exons from the gene they test were all free of mutations, so the WT1 test did not determine why Frieda had Wilms tumor. There are no other testing options at this time and we may never know if her case has a genetic basis or was just a fluke.

Our next trip to the clinic will be on August 7 to see the nephrologist.

Saturday, June 28, 2003 9:34 PM CDT

It�s been a while since we�ve updated the website, which is a good thing; it means Frieda is back to enjoying a normal toddler�s life. She has been going to school twice a week for two and a half hours each time. She really enjoys it and often comes home very tired. Mom also enjoys the break so she can get some other things done. Most of the rest of Frieda�s time is devoted to playing around home or at a nearby park. It has been six weeks since our last trip to the doctors, so we have established a more normal family routine. The one unfortunate thing that has happened is we lost our 50 year old silver maple tree in a storm on June 24. However, that seems very minor in comparison to the events over the last year.

We have received preliminary results from the WT1 (Wilms Tumor 1) genetic test that is being done in England. The gene has 10 different exons on which the mutation can occur. They have completed the tests on exons #6 - #9, which are where the majority of mutations are found. These were all found to be normal. They will now look at exons #1 - #5 and #10. It could be up to three months before we receive these results. This is the last genetic test being done. Although there are other possible genetic components that result in Wilms, no one is currently testing for these components. So if the WT1 tests are negative, there may still be a genetic component to Frieda�s Wilms, but we probably will never know for certain.

Frieda�s next doctor�s appointment is July 16th. She will have an ultrasound to monitor the spots on the remaining kidney and a check-up by her oncologist � but no pokes!!! (No blood draws, no medications!!) We expect Frieda to have ultrasounds every three months. On August 7th Frieda has an appointment with the nephrologist (kidney doctor). This is a routine follow-up visit, her last one was in January following the nephrectomy. We do not know how frequently they will want to see her in the future.

We have posted new pictures from the trip we took to Arizona at the end of May.

Sunday, June 1, 2003 9:46 PM CDT

We received the results from one of the genetic tests that were done to try to determine the cause of Frieda�s Wilms tumor. The UPD (uniparental disomy) test came back normal, meaning that Frieda does not have Beckwith-Wiedeman Syndrome. We were actually fairly sure of this all along since she shows no symptoms of it. We still are waiting for the results from England for the WT1 (Wilms Tumor 1) gene test. The preliminary results of this test are not expected for two more months.

With the treatment over, we were finally able to take a trip to visit Grandpa Sam and Grandma Betty in Arizona over Memorial Day weekend. In spite of the heat, Frieda really enjoyed the trip with some of her favorites being swimming for the first time, the train and merry-go-round rides at McCormick Ranch Railroad Park, and the airplane rides there and back.

Now that we may be able to have a more normal life, Frieda is very anxious to start at her �new school� in June. She starts going to Nursery School two mornings a week on June 10th. She has already been there for visits and participated in a music class and made a painting. The school is less than a block from our house and she almost never fails to remind us when we pass it that she will soon be going to her �new school� all by herself.

We�ve posted pictures from Frieda�s last clinic visit!

Friday, May 16, 2003 9:43 PM CDT

We�re finally done!!! Frieda had her IV port removed this morning, thus concluding nine months of treatment. The procedure to remove the port went very well. We went back to the operating room at 8:15 � right on schedule. The surgery took about a half an hour. By the time we saw her, she had recovered enough from the anesthesia that she was sitting up on the gurney demanding breakfast. She was released to go home at about 10:00. We�ve had longer visits just to check on a fever.

The next step is monitoring the remaining kidney to make sure there is no recurrence; we hope that is all we ever have to do. Her next scheduled appointment is for an ultrasound and checkup in mid-July.

Of course, all the doctors and nurses were very impressed with how Frieda helped with the exams (checking her blood pressure, taking her temperature, weighing her, etc.) and her large vocabulary. She has learned a lot in nine months of treatment and now knows every step in the routine. While they give Frieda a lot of credit for being cooperative, Children�s Hospital has helped by making the visits an enjoyable experience for her. As for the large vocabulary, well, when your parents are encouraging you to say Diffuse Hyperplastic Perilobar Nephroblastomatosis, most other words seem like a piece of cake.

Friday, May 9, 2003 9:47 PM CDT

On Wednesday, May 7, Frieda went in for her first CT scan since December. It showed no change in the spots on her remaining kidney since the nephrectomy � just as the ultrasounds have shown. This is good because the important thing is that the spots on her kidney do not grow. Her kidney will continue to be monitored by ultrasound but having a baseline CT scan of the current condition will be useful. Any possible changes detected through the ultrasound can be double checked with a CT scan for more exact measurements.

We are still on schedule for Frieda to have her IV port removed next week. As long as her blood counts are good, the surgery will be done the morning of Friday, May 16. It is a simple procedure that is done on an outpatient basis; she will probably be ready to go home by noon. Then it will really feel like we are through with the treatment phase. She will not have another scheduled appointment until mid-July � for an ultrasound and checkup. Whatever will we do without going to the clinic every week or two!?!

Yes, there are finally new photos for your viewing pleasure!

Friday, May 2, 2003 10:22 PM CDT

Chemotherapy is done!! On Thursday, May 1, Frieda received her last dose of chemotherapy. Her cancer is in remission and all that remains for this part of the plan is a CT scan on May 7 and minor surgery on May 16 to remove her IV port. The CT scan is to establish a base line in case there are ever signs of recurrence. The IV port removal is an outpatient surgery, which is good since we have spent enough nights at the hospital.

After this, we expect to go back in every three to four months for ultrasounds until Frieda is seven years old � then every six months to a year after that. The type of cancer that Frieda had has a 40-50% rate of recurrence that tends to decrease at seven years of age. We have a feeling Frieda will actually miss the frequent visits to the clinic. Lately, she has seemed eager to go see her nurse and doctor (and play with the toys, of course).

Also on Thursday, we all had blood drawn for the genetic tests. The UPD (uniparental disomy) test for Beckwith-Wiedeman Syndrome requires blood from all three of us to be sent to a lab in Oklahoma. The WT1 (Wilms Tumor 1) gene test is done in England with just Frieda�s blood sample. It will be at least three weeks before we get any results from these tests.

We have learned a lot during the nine months of chemotherapy. We had never heard of Wilms� tumor or diffuse hyperplastic perilobar nephroblastomatosis a year ago, but now know more than we ever wanted to about them. We have seen how well Frieda can keep her spirits up through difficult times and how lucky we are to have such a resilient little girl. Her doctors and nurses frequently comment on how she is one of their most cooperative patients. Frieda has learned much about being a doctor. She regularly examines her many stuffed animals and has continued to want to help with her own medicine. At the last chemo, she actually squeezed the syringe by herself to administer one of her flushes. In spite of the difficult circumstances, we believe that it has not been an unpleasant experience for Frieda. Soon the effects of chemo will wear off and we may learn about life with a normal two year old, but how tough can that be in comparison?!?

Saturday, April 19, 2003 2:07 PM CDT

So much for having a three week break from doctors! Frieda�s fever came back on Friday and Saturday last week and her oncologist had us bring her in on Saturday to give her another dose of antibiotics and start another blood culture to check for infection.

We went home thinking that that would be the end of it; Frieda�s fever was going down and she seemed to be her normal self. Sunday Frieda did not have a fever but the culture from Saturday was showing signs of bacteria so we needed to bring her back in for another dose of antibiotics and yet another blood culture to verify which results were accurate. Although the consensus was that the culture from Saturday had somehow been contaminated and Frieda did not really have an infection, it was decided the safest thing to do was to administer the antibiotics for seven days.

We left Frieda�s port accessed when we left the hospital on Sunday so they wouldn�t have to poke her every day. Mommy and Frieda went in on Monday and Tuesday to get the medicine and, in Frieda�s case, play. Frieda found a jump rope to play with on Monday and also discovered the joy of cutting paper with scissors. By Tuesday the blood culture from Sunday still showed no signs of bacteria so the decision was made to do another blood culture and give Frieda the dose of antibiotics but have that dose be the last one (unless, of course, any of the blood cultures started to show infection�). We just had to go back on Thursday for one final blood culture. At Thursday�s visit, it was agreed that there was no infection showing up in the blood cultures � the one from Saturday was probably the result of a contaminated sample. Therefore, we did not schedule any other appointments prior to her chemotherapy on May 1. However, we will not jinx everything buy saying we have a break until then!

Although it was a difficult week, this was just a minor inconvenience and doesn�t affect Frieda�s treatment. There still is just one more session of chemotherapy and the plan for monitoring after chemotherapy remains the same. The CT Scan has been scheduled for May 7th and her port will be removed soon after her last chemotherapy injection.

Friday, April 11, 2003 10:14 PM CDT

It was a very busy week for Frieda with three trips to the doctor, two of which were scheduled. First, we went to see a geneticist on Tuesday to discuss possible genetic factors for Frieda�s cancer. The doctor measured Frieda in several places to determine if she had hemihypertrophy, which is growth one side of the body that is greater than the other side. Frieda�s measurements were very symmetrical, so it is unlikely that she has hemihypertrophy � which confirms the preliminary results of the tests done in November for this condition. The geneticist also discussed Beckwith-Wiedeman syndrome, which is usually characterized by larger than normal internal organs, and several other rarer genetic conditions that frequently include Wilms tumors among other health problems. Frieda does not show any signs of any of these syndromes and the geneticist feels that these are unlikely.

This leaves us without much knowledge of causes, but they gave us two options for further testing. One test is to find out if Frieda inherited both of her chromosome 11s from one parent instead of one from each � an abnormality referred to as Uniparental Disomy or UPD. This involves sending blood samples from Frieda, Mom, and Dad to a lab in South Carolina for genetic testing. UPD in chromosome 11 is an indicator of Beckwith-Wiedeman syndrome so this is an unlikely cause, but this test could rule it out for certain. The other test is for the �Wilms Tumor 1� gene (WT1). The only lab currently doing this testing is in England and they would send a piece of Frieda�s tumor, if available, and a sample of her blood to England to for testing. If both of these tests are negative, then there is a 10% probability there is a genetic cause for Frieda�s cancer but we will probably never know for sure.

The next trip was the weekly visit to the clinic on Thursday for another attempt at her chemotherapy. Since Frieda had a slight fever on Wednesday night, we were fairly sure that her blood counts would be too low again. However, the counts were the highest they�ve been since she started treatment, so they went ahead with the chemotherapy. This leaves us with one more dose, with the next attempt scheduled for May 1. We will not be promising a date that she will actually receive the treatment.

Unfortunately, Frieda�s temperature rose to 103.5, requiring us to go back in Thursday afternoon. She was feeling miserable when we went in and was not at all happy to hear that she would be getting more medicine. They needed to draw blood for a culture to make sure it was not a bacterial infection and also needed to give Frieda a dose of antibiotics that would last the 24 hours as a protective measure until the results of the culture were available. By the time they were done administering the medication and some IV fluids, Frieda was starting to recover. In fact, she even announced on the way home that she felt better. Preliminary results from the culture show no signs of infection and we are fairly sure she just has some sort of virus.

All of us, especially Frieda, are looking forward to the three week break before the next scheduled treatment on May 1.

Sunday, April 6, 2003 8:55 PM CDT

Although Frieda�s blood counts continue to increase, they were still not quite high enough for her to get her chemotherapy on Friday. Her oncologist tells us that radiation can affect the body�s ability to recover, so we may be seeing the effects of the radiation that Frieda had around Christmas and New Year�s. We will go back next Thursday, April 10, and try again. We still have one additional chemotherapy dose before she�s done.

Also on Friday, Frieda had another ultrasound and a chest x-ray. The ultrasound showed no change in the spots on her kidney from the previous ultrasounds. The oncologist�s guess is that these spots may be dead cancer cells; however, they are areas that will continue to be monitored after chemotherapy is completed. The x-ray is a routine procedure at the end of the protocol to ensure that there is nothing out of the ordinary. (In the �It�s A Small World� category, the radiologist was Frieda�s Aunt�s boyfriend�s Sister-in-Law�)

At the end of her chemotherapy, Frieda will have a CT scan to document the post-treatment base line and her IV port will be removed. Fortunately, the removal of the port is fairly easy and won�t require an overnight stay in the hospital. Going forward, she will be monitored with ultrasounds every three months for at least a year, eventually switching to every four months and then five months. We may be able to eliminate the ultrasounds in a couple of years, but that is a decision for the future.

There is always the possibility of recurrence for Frieda. New nephrobalstomatoses could develop. These are most commonly seen in the six to twelve months after chemotherapy has ended and do not necessarily need to be removed � they have been known to disappear on their own. Another bout with Wilms is also a 40% - 50% possibility. Generally, if this is to happen, it occurs within four years. However, there have been cases of recurrence as late as twelve years after the end of the initial treatment. Frieda will definitely have life-long monitoring of her condition.

Friday, March 28, 2003 9:25 PM CST

Frieda�s blood counts were higher this week but still not quite high enough to get her second chemotherapy drug from last time. It is nothing to worry about, except it postpones the end of treatment. Chemotherapy can have a cumulative effect and it can take a little longer for her blood to recover after several months of treatment. Even fighting off a slight cold can cause her counts to drop.

As a result, April 4th will be a very busy day. Frieda will have an ultrasound and chest x-ray before we meet with the oncologist and (we hope) have her chemotherapy treatment. The chest x-ray is routine part of the protocol just to make sure there is nothing in the lung area. In Frieda�s case it probably isn�t really needed, but we will have it done to be absolutely sure. We will also discuss the post chemotherapy plan with her oncologist.

We can see that Frieda is finally getting a little tired of all of the treatments; but who could blame her? This has been going on for nearly eight months now and she has been very patient and helpful the whole time. She can still manage to do most of the exam herself, but isn�t quite as quick as before in helping to access her port, which requires a poke (ie. large needle). Even so, she still seems to be remarkably cooperative for a two-year old. Fortunately, if her blood counts improve, she should only have to go through it a few more times.

Frieda has decided that the correct way to wear socks is to have a different color on each foot. She is very deliberate about her choices of colors each day � taking a pair of socks out of her drawer, pulling them apart, putting one of them back, selecting another pair to pull apart, and putting one back neatly in the drawer. So, if you happen to see this as a new trend in the fashion magazines, you�ll know who started it!

Friday, March 21, 2003 9:13 PM CST

Frieda returned to the clinic this Thursday, March 20, for what we hoped would be her penultimate session of chemotherapy. Unfortunately, her blood counts were low, so she only got one of the two medicines that were scheduled and we have to go back next week for the other one. This probably means that the next treatment (we hesitate to call it the last with the way things are always changing) will be pushed back from April 10 to April 17.

While her blood counts were a little low for one of the chemotherapy drugs, they weren�t low enough to slow down Frieda�s normal two-year-old activity. Spring session started at school on March 12 and Frieda is again going to two classes on Wednesdays � in the morning with mommy and then Family Gym Time in the evening with daddy. She still really enjoys school and is excited every time we tell her it is a school day. Her one disappointment is that the trampoline from her gym class is broken and she will not be able to play on it this spring. However, she is becoming an excellent red light - green light player.

We have some busy weeks coming up in the near future. There is chemotherapy on March 27, an ultrasound on April 4, and a meeting with a geneticist on April 8. The chemo currently scheduled for April 10 will probably be rescheduled for April 17, so we get to visit doctors each of the next four weeks. After that, we hope it slows down to a schedule of regular monitoring.

Saturday, March 1, 2003 9:39 PM CST

This week�s chemotherapy went well. Frieda helped push in all of the medicine and charmed everyone at the clinic, as usual. The nurse practitioner who examined Frieda was impressed with how cooperative she was - it took her 20 minutes to get another 2-year old patient to open his mouth and stick out his tongue; Frieda does it the first time she is asked.

In her more normal life, this week marked the end of winter quarter for Frieda�s early childhood family education classes. She enjoyed going to school with both her parents, so will again go to two classes in the session that starts March 12.

We can now see the light at the end of the tunnel for chemotherapy. The next chemotherapy is scheduled for March 20 and, if everything goes according to plan, April 10 will be the next ultrasound and the final chemo treatment!

We have posted some new pictures for your viewing pleasure�

Saturday, February 22, 2003 9:43 PM CST

Frieda had a nice break from doctor�s visits between her last chemotherapy and this week�s ultrasound on Thursday, February 20. She was a very patient through the whole hour-long process � lying still while the technician took the ultrasound pictures, waiting for the radiologist, then having more pictures taken after the radiologist came in. The results of the ultrasound were good: of the two spots that were measured on the last ultrasound, one appears to have shrunk and the other one appears to be about the same size as before. There was also one other very small spot that was evident in the January ultrasound which they couldn�t find this time. As long as the spots on her kidney do not grow, we will stay with the plan of three more sessions of chemotherapy and monitoring the kidney with ultrasounds. The next ultrasound will be in six weeks.

Frieda is continuing to enjoy school. She was very excited on Wednesday morning when Mommy told her they would be going to school that morning and Frieda realized that she would get to back to school with Daddy after supper. It is a lot of fun to play with the other kids and it was exciting to see a baby at class on Wednesday night!

The next chemotherapy is scheduled for Thursday, February 27, so look for another update shortly after that.

Saturday, February 8, 2003 9:25 PM CST

Frieda had another dose of chemotherapy on Thursday, February 6, and it went pretty well. She even helped the nurse squeeze one of the syringes to push in one of the medications. The next item on the treatment schedule is an ultrasound on February 20, which is meant to compare the size of the two remaining spots on the right kidney to their size from the last ultrasound. The next chemo treatment is on February 27th.

Otherwise Frieda had a very busy week. In addition to her two classes and play group, she went to the zoo and attended an ice cream social put on by her school. She really enjoyed a dolphin show at the zoo and dancing to the Teddy Bear Band at the ice cream social.

Saturday, February 1, 2003 9:45 PM CST

We went all week without one visit to Children�s Hospital! It was very nice to have a more normal week (but we are not yet sure what a �normal� week with a two-year old would be). It has now been six months since the care-free days before we knew there was anything called Wilms tumor � let alone diffuse hyperplastic perilobar nephroblastomatosis. It feels, however, as if we have been dealing with it for much longer.

Frieda has been through more than any little girl should: three surgeries, nearly three weeks in the hospital, radiation, and trips to the hospital almost every week for treatments or CT scans. Throughout this time, she has continued to develop into a charming toddler. She is quickly developing her vocabulary and seems to run faster every day. Of all of us, I think Frieda has handled these six months better than anyone.

We finally have some pictures from our recent vacation at Children�s and have selected a few for posting here.

Saturday, January 25, 2003 at 08:55 PM (CST)

Frieda�s visit with the kidney doctor went very well this week. He thinks she is doing great and does not feel he needs to see her again until the end of the summer. Even though she only has one kidney, there is really nothing special we need to do as far as her diet. They only activities they discourage are football and hockey � which we don�t think we need to worry about for a few years�

The earliest we could get in to see the geneticist is the first part of April so it will be quite a while before we have any further information about a possible genetic link to Frieda�s Wilms.

Frieda showed daddy the correct way to play t-ball this week at family gym time. Apparently, you need to hold the fat end of the bat and push the ball off of the tee with the thin end. Maybe she can help the Twins out this season.

Saturday, January 18, 2003 at 09:30 PM (CST)

Frieda had her chemo treatment on Thursday with no difficulties. Her next treatment is scheduled for February 6. There will be three more treatments after that at three week intervals, which would take us to early April if everything goes as planned. (Of course, nothing has actually followed the plan yet�) Frieda will see the kidney doctors next week and we will be scheduling an appointment with a geneticist to discuss more genetic testing.

Meanwhile, the rest of our life is getting back to normal. Frieda and Mommy were glad to get back to their weekly play group and toddler class and, next week, Frieda and Daddy start going to family gym time one evening a week. (Free time for Mommy!) Perhaps Frieda will earn that athletic scholarship that her dad couldn�t quite get

Saturday, January 11, 2003 at 09:18 PM (CST)

On Friday, Frieda had an ultrasound to take a look at her remaining (right) kidney. The Radiologist estimated that the two remaining spots on the kidney were one centimeter each. (These are the two small areas deep in Frieda�s kidney that the Oncologist and surgeons decided not to remove.) The process took a little longer than Frieda would have liked, but we brought plenty of stickers along for her to play with. She was particularly proud to wear stickers on her cheeks and nose as we made our way from the Radiology Department to the Oncology Clinic. There will be another ultrasound in 6 weeks to monitor the spots and make sure they do not increase in size.

Frieda was scheduled to receive two chemotherapy drugs on Friday but her blood counts were a bit low (probably due to the recent radiation therapy) so she only had one of them. We will try again for the other one next Thursday (January 16th). This will shift the schedule by one week so the next chemo will now be on February 6th instead of January 30th. They are going to extend her chemotherapy through mid-April. The original schedule called for the next dose to be the last one but most patients have their surgery much earlier in the schedule than Frieda did. The additional doses will ensure that any small particles of tumor that may have broken off during surgery and remain in her system will be adequately treated.

It is obvious now that Frieda�s hair is growing back and it looks darker and thicker than before. We don�t know if it will stay this way but we�re hoping � since she had to go through losing her hair - maybe she will get a second chance at having her mom�s hair.

Saturday, January 04, 2003 at 03:11 PM (CST)

Frieda�s last radiation treatment was on December 31, completing a run of being at or going to the hospital 18 out of 20 days. We are glad to be getting back to a more normal life. Our next visit to the hospital is Friday, January 10 for chemotherapy and an ultrasound. After that, Frieda has an appointment with the kidney doctor on January 23 and another appointment for chemo on January 30; we expect her chemo treatment to be extended a couple more months, but haven�t heard anything definite yet.

We also received results on the first genetic test, which determined that Frieda does not have hemihypertrophy. Hemihypertrophy is the overgrowth of one side of the body and children with this condition are more likely to develop Wilms� tumor. We will be testing her for other genetic markers to try to determine if there is a genetic cause for her tumor.

For your viewing pleasure, we have posted new pictures from Frieda�s birthday party and Hanukkah.

Wednesday, December 25, 2002 at 08:24 PM (CST)

Frieda had a wonderful Christmas since she was able to go to the family gatherings. She received an abundance of new toys and, with what she received while in the hospital, we may have some storage difficulties. It was great for the rest of us to have the hospital stay behind us and enjoy the holidays.

There have been two radiation treatments so for � December 24 and 25. On the 24th we had to be at the hospital at 6:00 am and they did both the planning session that marked the radiation area and the first treatment. Including Frieda�s recovery time for the sedation, we were there for almost five hours. Today was much simpler, the radiation only takes a few minutes and most of the time is spent with the anesthesiologists sedating her and monitoring her recovery. Radiation will be each week day through December 31 (four more times) and all should be simple and quick. Since the hospital stay is over and we are returning to a steady treatment plan, we will go back to weekly updates for this website. Look for the next update in early January.

Monday, December 23, 2002 at 07:42 PM (CST)

We�re home!! Frieda was released this afternoon (Monday, December 23) and does not need to go back to the hospital until 6:00 am on Tuesday, December 24 � for radiation. Tuesday�s visit is for the planning session plus the first dose of radiation. It will be followed by radiation each day this week (including Christmas) and Monday and Tuesday of next week. The doctors have decided not to radiate the right kidney - just to radiate the left side.

Frieda will also receive the other half of this week�s chemotherapy tomorrow. We do not yet know how much longer she will be on chemotherapy. Her treatment plan calls for two more doses � on January 9th and 30th � but her oncologist is leaning toward extending it through March.

Needless to say, we are all very happy to be home. Although she had a very exciting time playing with toys at the hospital, Frieda was getting very tired of having different people examine her every few hours. Mommy may be the happiest of all after sleeping in a hospital for 12 nights; the accommodations are somewhat short of luxurious. We hope to vacation elsewhere next year.

Sunday, December 22, 2002 at 10:14 PM (CST)

Frieda finally had the NG tube removed from her nose at 1:30 on Sunday. After it was removed, she started drinking water and then progressed to milk in the evening. She should be able to move on to eating other things on Monday morning and will hopefully be eating normally by the end of the day. She also got to have her IV removed for six hours this afternoon, which allowed her to roam freely throughout the play area. It was the first time in 10 days that she could walk and play without somebody following her pushing an IV pole. The IV was started again when she went to bed, but it is only for 12 hours so she will have playtime most of the day on Monday.

Chemotherapy started again today with Frieda getting her first post surgery dose. She will probably get another of her chemo drugs on Monday then return to getting chemotherapy every three weeks, probably through March. We expect to see Frieda�s oncologist on Monday morning to learn about the plan for radiation and, hopefully, when she can go home. With the progress that Frieda made over the weekend, we think there is an excellent chance of going home before Christmas.

Saturday, December 21, 2002 at 03:57 PM (CST)

We�ve never been so excited to see a poopy diaper! Frieda finally had one this afternoon (Saturday) and, we hope, this means her NG tube can come out tomorrow morning. Then she can start on a liquid diet and, if all goes well, progress to soft food and solids. We think Monday is the earliest we would go home.

Frieda has been able to spend quite a bit of time in the playroom today and plays in her crib when she needs to be confined to her room. She is very anxious to go home - she has had enough of all of these different people taking her blood pressure and temperature and wanting to listen to her belly. Of course, Mom and Dad are also anxious to go home; with Frieda now being active it is an even greater challenge to keep her content in a hospital room.

Chemotherapy will resume tomorrow with the drugs that were scheduled for December 19 being split between Sunday and Monday. We still don�t have a final word on radiation � it is our understanding that her oncologist wants to give it a lot of thought and consult with as many people as possible � but it could still start on the 26th.

Friday, December 20, 2002 at 03:51 PM (CST)

Frieda is feeling really well today (Friday). She has been playing in her crib most of the day and even got to go to the playroom for a while when they temporarily disconnected the suction from her NG tube. We are still hoping the tube will be removed tomorrow � it all depends on when her digestive system shows signs it has resumed normal functioning. Once the tube is removed, she will then have to progress through the three phases of food again � clear liquids, soft foods, then solids � before she will be discharged.

The oncologist hopes to have a decision Monday for the radiation plan. As of now, it looks like radiation will start on Thursday, December 26, but we don�t know if the remaining kidney will be radiated or whether there will be 6 or 8 sessions of radiation. The decision on what to do depends on the status of the remaining kidney. If it has Wilms tumor, radiation should include that kidney; but if it is all nephroblastomatosis, it is better to limit radiation to the side from which the kidney was removed. Of course the pathologist here and the one at the National Wilms Tumor Study Group have different opinions, so once again we will be making an educated guess on the best course of action. Fortunately, all of our previous guesses appear to have been correct.

Chemotherapy will probably resume early next week, most likely on Monday. We expect to still be in the hospital on Monday but have hopes to be home by Christmas. This weekend looks like it will be playtime at the hospital for Frieda.

Thursday, December 19, 2002 at 02:01 PM (CST)

Thursday has been uneventful � no vomiting, no strange medical conditions, no nurses who don�t know the way to radiology. Frieda is resting fairly comfortably while recovering from her latest surgery. Radiation therapy was originally scheduled to begin on December 26, but will probably not start until the following week due to the second surgery. Frieda�s chemotherapy that was scheduled for today has also been postponed a few days to give her system time to recover.

The doctors have warned us that recovery from two abdominal surgeries so close together takes a bit longer so our hope for leaving the hospital by the end of the weekend may be overly optimistic. So now we�re hoping for Tuesday!

Wednesday, December 18, 2002 at 10:14 PM (CST)

At 10:30 Tuesday night, Frieda underwent surgery to correct an �intussusception� of the small intestine � a condition in which the intestine telescopes into itself effectively blocking it off. Bowel obstructions are a potential risk after an abdominal surgery. Of course, this particular condition usually occurs in the large intestine and is extremely rare in the small intestine � Frieda likes to keep the doctors on their toes. It was this blockage that was causing the vomiting.

Frieda spent most of today (Wednesday) sleeping. We expect her to start getting back to her normal self tomorrow. We, again, need to go through the whole �recovery from surgery� process so we expect her to be in the hospital at least through most of the weekend.

Tuesday, December 17, 2002 at 07:43 PM (CST)

Tuesday was the day that we had hoped to be discharged. Unfortunately, Frieda has not made any progress on eating. There appears to be a blockage preventing things going from the stomach to the bowels. Because of this, she is still not eating anything and will not be able to go home until she is able to eat solid foods. She is getting a CT scan to find the exact cause and to plan the least invasive cure possible. My understanding is that this is not uncommon for the kind of surgery that Frieda had and if she requires another surgery to remove the blockage it would not be a real complicated procedure. Unfortunately, the recovery could be just as long as the nephrectomy, so we still may have a while in the hospital.

The good news is that Frieda does not seem to have much pain from the incision. When she starts acting uncomfortable it appears to be caused by nausea because she throws up and then gets right back to playing. She has moved beyond foosball and is enjoying playing with many toys that they have there; another patient even let Frieda play with his blue bear. We hope to have a plan for dealing with her stomach problems on Wednesday, but it has the potential to be a very busy day.

Monday, December 16, 2002 at 07:12 PM (CST)

On Monday, Frieda finally got to enjoy the play area. They have a lot of fun toys for her. She really seemed to take a liking to foosball, which will be difficult for her to play until she can see the top of the table. She has, however, mastered taking the ball out of the goal and putting it through the hole to start play. We also toured the floor in a wagon and encountered some familiar faces from our previous stay in the hospital.

Walking is an important step to Frieda�s recovery because the doctors say it is the best thing to help get her bowels moving. Getting her bowels back to normal functioning is the biggest challenge for her now as most things are coming out through her mouth instead of the other end. She will need to get that working properly and then progress through eating clear liquids, soft foods, and solids before she is released from the hospital. The difficulty in returning to normal bowel functions is more related to the anesthetics and poking around during surgery than the cancer.

We received a little more information on the pathology, but it still needs to be looked at by the National Wilms Tumor Study Group before any final decisions are made. What they told us at this point is that the kidney that was removed definitely had active Wilms. The small growth that was removed from the remaining kidney appears to be nephroblastomatosis with a small �rest� of Wilms in it. Frieda�s oncologist will consult with other specialists this week to try to make a final decision as to if Wilms is/was present in the right kidney. If there is/was not any Wilms in the right kidney, they would not have to do any radiation on that side. The lymph node they removed did not show any abnormalities.

We visited the radiation oncology office today to discuss the plan for Frieda�s radiation therapy. She will have one visit for a planning session and then six visits for radiation. The protocol is to get started within nine days of surgery, which means we would be going there on Friday. However, nothing will be scheduled until Frieda recovers and the doctors discuss the pathology results.

Sunday, December 15, 2002 at 04:04 PM (CST)

Frieda is doing much better today (Sunday) than she was yesterday. Her epidural was removed early this morning, which allowed one of the machines that monitors her breathing to be turned off. This was a great relief to all of us because that monitor kept beeping due to loose connections and was more of an annoyance than a help. In the early afternoon, her catheter was removed, which gives her much greater mobility. She even got to leave the room for a few minutes to tour the 8th floor and made a brief visit to the playroom. She is now down to having just an IV and only needs to be hooked up to the pulse-oxygen monitor when she is getting pain medication or sleeping.

Frieda is still not interested in clear liquids (the first step to a normal diet). She will need to be on solid foods before she is discharged. Tomorrow afternoon (Monday),we have a meeting with the radiation staff to discuss the treatments she will be receiving from them sometime this month.

Sunday, December 15, 2002 at 04:00 PM (CST)

Saturday, December 14, 2002 at 04:08 PM (CST)

Frieda has been much more comfortable today as her nose tube was removed this morning. She still has quite a bit of pain and we can definitely tell when she is due for her next dose of pain medication.

She is able to be on a clear liquid diet as of this afternoon but she's just not interested in Pedialite, water, or juice - she wants apples and milk! She also wants to watch her Elmo video.

If all goes well tonight, her epidural will be removed tomorrow. Then she won't have to be hooked up to as many machines and we will be able to take her for wagon rides and she may even be able to go play in the play room.

All reports from her various doctors indicate that they are pleased with her recovery and her remaining kidney appears to be functioning very well. Hopefully she will start eating tomorrow and be on a normal diet by sometime Monday so we can go home Tuesday!

Friday, December 13, 2002 at 11:15 PM (CST)

Frieda had a tough day on Friday because it is not easy to recover from abdominal surgery. She has so many things connected to her that it is difficult to get comfortable. The worst thing for her is probably the drainage tube that comes out of her nose, which also requires her to have things called �No No�s� on her arms that keep the elbows straight so she cannot pull the tube our of her nose. This afternoon, the urologist wrote up orders for the tube to be removed on Saturday morning. This will make her much more comfortable and perhaps give her some mobility, at least enough so Mom and Dad can meet Frieda�s demands to carry her.

We did not hear anything on the pathology yet, but several doctors visited Frieda throughout the day and all seemed to agree that she was progressing well. In spite of not taking her medication since Thursday morning, Frieda�s blood pressure has been in the normal range all day; it is possible that her high blood pressure was caused by the tumor on the kidney that was removed. Her remaining kidney is producing plenty of urine and is functioning very well according to a preliminary blood test - there will be another test after a few days. Our hope is that Saturday she can spend some time out of the crib and each day will get progressively better. Please see this site again tomorrow if you would like to check on her progress.

Friday, December 13, 2002 at 12:26 AM (CST)

Thursday�s surgery went fairly well and Frieda is resting as comfortably as can be expected. She had a full nephrectomy, which means that they removed her entire left kidney. The good news is that her right kidney looks good, with only a few diffuse areas of growth on it. The urologist removed the largest spot that he could see (he referred to it as a glorified biopsy) and it will be sent to pathology to try to determine if it Wilms tumor or nephroblastomatosis. If it is nephroblastomatosis, the remaining chemotherapy should take care of it with no additional surgery. If it is Wilms tumor, it may need to be cut out in a future surgery. We may have a preliminary pathology report as soon as Friday.

Frieda again proved what an incredible girl she is. She was not allowed to eat prior to the operation and was not taken in for surgery until 4:00 pm. In spite of how difficult it must have been for her, she was very cheerful all day. An IV was installed during the surgery and the nurse says they may start her on liquids on Friday. For pain, she has an epidural which is expected to be in for at least a few days. Our estimate is that Frieda will probably be in the hospital for close to a week. We should learn more as we see doctors on Friday, so the web site will be updated again on Friday night.

Thursday, December 05, 2002 at 08:14 AM (CST)

Frieda�s surgery has been scheduled for Thursday, December 12th at 2:00 pm. They hope to save part of the left kidney, but they may end up removing it. They are not planning on doing anything to the right kidney. We expect Frieda will be in the hospital until Tuesday, December 17th.

In other news, it seems our dog Nickie has actually recovered from his broken toe. Apparently, the bone has healed � it has just healed in two pieces instead of fusing back together. He will get his cast off today (Thursday) and should be fine.

New Elephant pictures have been posted!

Friday, November 29, 2002 at 03:22 PM (CST)

We met with the surgeons on Tuesday and spoke to Frieda�s oncologist today. It looks like surgery will be scheduled for sometime during the week of December 16; the day will be dependent on the surgeons� schedules. (We should know the exact date sometime next week.) The plan is to remove the tumors in the left kidney and hopefully have enough kidney tissue for it to function properly. Due to the positioning of the tumors, this is a very difficult procedure and the doctors have told us that we need to be prepared for the whole left kidney to be removed. It is difficult to tell from CT scans the exact shape of the tumors, so the doctors will not know the chances of saving part of the kidney until they are able to see it during surgery.

At this time, there are no plans to remove any of the right kidney. Frieda�s oncologist believes the areas of tumor we are seeing on the CT scan are not Wilms but are just diffuse hyperplastic perilobar nephroblastomatisis. If this is the case, they do not need to be removed as the chemotherapy has eliminated any risk from these areas. Since the left kidney may not be able to be saved at all, we do not want to cut out any pieces of the right when it may not be necessary. One full kidney is enough for a full, normal life. However, if the surgeons are unable to save any of the left kidney and try to remove all tumor areas from the right kidney, Frieda may only be left with � of a kidney � which would get her through childhood but not adolescence. There is still a chance that microscopic areas will flair up in the future which is another important reason to preserve as much kidney tissue as possible at this time.

After Frieda recovers from surgery, there will be daily radiation treatments for one week. Frieda had her chemo Friday (today), but that looks like her last trip to the clinic prior to surgery. She only has three more scheduled chemo treatments - through the end of January - but, to ensure any remaining tumor cells are eliminated, her oncologist will be extending those treatments.

Happy Hanukah!

Friday, November 22, 2002 at 09:46 PM (CST)

A preliminary look at Frieda�s CT scan from Thursday appears to show no change from the previous CT scan. We will get more information on Tuesday, November 26, when we meet with the oncologist and the surgeons. This meeting was originally scheduled to discuss the likelihood of saving part of Frieda�s left kidney (i.e. interrogation of the surgeons by Grandpa Sam), but now may also include scheduling surgery for December � stay tuned.

Not to be left out, our dog Nickie had a follow-up x-ray on his broken toe Thursday night to see if it had healed enough to remove his cast. The x-ray actually looked worse than the one taken 5 � weeks ago! Needless to say, the cast probably isn�t coming off for a while. The veterinary radiologist from the University of Minnesota will look at it on Wednesday, November 27, so we should learn more about the situation after Thanksgiving. (Maybe we should have copies of Nickie�s x-rays sent to Grandpa Sam along with Frieda�s CT scans�)

Saturday, November 16, 2002 at 08:21 AM (CST)

This week, we celebrated Frieda�s Birthday by NOT going to the Oncology clinic for the first time in three months! Instead, we went to the pediatrician�s office for her check-up. (We wouldn�t know what to do with ourselves if we didn�t visit a doctor every week.) The visit went very well and her pediatrician was very impressed. Not every 2 year old knows all of the colors � let alone how to use a stethoscope and otoscope! When we asked how Frieda�s development was progressing, her only advise was to start saving for college � she seems to think Frieda will end up at a very expensive East Coast school. Frieda is a very healthy, happy child - who happens to have cancer.

Next week, Frieda has another CT scan to check on her tumors. We are also hoping to have a �team meeting� with her oncologist and the surgeons before Thanksgiving to discuss where we are as far as saving part of the left kidney. Surgery will not occur until the tumors stop shrinking.

Friday, November 08, 2002 at 08:57 PM (CST)

This Thursday was very busy. First, we met with a Geneticist to discuss testing Frieda for �Hemihypertrophy� � the overgrowth of one side of the body. Children with this condition are more likely to develop Wilms. Many Hemihypertrophy cases are very clear, with one side growing larger throughout the body. One of Frieda�s feet is slightly larger than the other � as is the case for most of us � and her oncologist is not sure if the difference in her feet is significant enough to indicate the condition. If the test comes back negative there are some other genetic markers they can look for. Only about 20% of bilateral Wilms cases are related to genetic causes. The benefit to determining if there is a genetic cause is to find out if we, or Frieda, have a higher risk of having children who may develop Wilms.

After this meeting, Frieda received her chemotherapy. Her oncologist confirmed that they won�t do surgery until the tumors stop shrinking. This means she won�t necessarily have surgery in December (although she still might) and it could even take place next spring. They will keep doing CT scans every three weeks to monitor the tumor size. Her next scan is scheduled for November 21st.

Our final stop was the nephrologist (kidney doctor). He was pleased with her progress and felt she was doing well enough that he did not need to see her again until the surgery. We learned that the medication Frieda is on for her high blood pressure also helps her kidney function. So, she will continue to be on the medication after her surgery even if her blood pressure is normal.

Friday, November 01, 2002 at 10:09 PM (CST)

Frieda celebrated Halloween by getting another CT scan - fortunately showing that the tumors are still shrinking. The amount of kidney that could be saved on the left side is still questionable. We will continue with the chemotherapy schedule and hope that the tumors shrink enough so they can save some of the left kidney. It is still not clear how much of Frieda�s right kidney will be removed � it is possible they will just do a few more biopsies if they are convinced there is no full-blown Wilms Tumor on the right � just nephroblastomatosis. Surgery will not be scheduled until we get a CT scan that shows no additional shrinkage. The next scan is scheduled for November 21st.

Of course, after the scan, we had to go up to the oncology clinic and show everyone what a cute elephant Frieda was. As we went from place to place, everyone at the hospital wanted to give Frieda goodies. She received a little Halloween bag in the recovery room containing, among other things, animal crackers that were very fun for Frieda to eat; she picked a toy turkey out of the �grab bag cauldron� at the oncology clinic; and �won� a teddy bear at the hospital Halloween party (because Frieda needs more stuffed animals). The general consensus (among both her friends and complete strangers) was that Frieda the elephant is extremely cute; you may see for yourself by looking at the new pictures.

Frieda�s doctor has also commented on how well Frieda is handling the chemotherapy. In about 70% of the cases she sees, the gross motor development (large muscle skills like walking) of many children Frieda�s age either stalls or regresses. Frieda has not slowed down at all. In fact, she is walking up and down steps herself now � something she was not yet doing when she was diagnosed in August. It would not have been surprising if Frieda had not developed such skills during chemo, but it takes a lot more than that to stop our little girl!

Saturday, October 26, 2002 at 01:31 PM (CDT)

For the first time in 2 � months, Frieda did not get any chemotherapy drugs this week! For her, this means our trip to the oncology clinic was all fun. When we arrive, it is like Norm entering Cheers; when we open the door, the nurses are watching her and the receptionists are leaning over the desk � and everyone says �Frieda! Frieda�s here!� They love watching Frieda play with the toys.

Frieda even charms complete strangers. As we were leaving, the elevator door opened to reveal a cart with a pumpkin on top; Frieda pointed at the pumpkin and exclaimed �Puh!� One of the women standing by the cart turned and saw Frieda and then gave her the pumpkin. Frieda was very happy to bring the pumpkin home.

The next CT scan is Thursday, October 31. Since it is Halloween, Frieda will wear her elephant costume to the hospital and will also visit the oncology clinic to show it off. It is still very unlikely that surgery will follow this scan, but the likelihood increases as we progress through her treatment. Surgery will most likely be scheduled as soon as we get scan results that indicate no further tumor shrinkage has occurred.

Thursday, October 17, 2002 at 09:10 PM (CDT)

Frieda continues to do very well. She is actually two-thirds of the way through her chemo treatment! From now on, she will only get the chemo drugs every three weeks; the other weeks she will still have blood tests and exams. This means she has five more scheduled chemotherapy treatments from now through the end of January. (It is possible they will decide to do a few more chemo treatments past January due to the nephroblastomatosis.)

Frieda�s next CT scan is scheduled for October 31st � so, yes, she will be wearing her Halloween costume!

In other news, our dog Nickie broke his toe over the weekend and will be hobbling around in a cast for the next six to eight weeks. At least the cast is purple so it matches his collar and leash�

Saturday, October 12, 2002 at 01:43 PM (CDT)

Frieda had her 3rd CT scan Friday (October 11) and it continues to look promising. The tumor appears to be smaller than it was on September 16 and the oncologist estimates that it is about 55-60% smaller than the August 3 CT scan, when Frieda was originally diagnosed. Based on the results of this scan, Frieda�s oncologist �proposed� that any areas of Wilms tumor are only on the left kidney and the growths on the right kidney are all Diffuse Hyperplastic Perilobar Nephroblastomatosis (DHPLN). If that is correct, they may not need to remove any of the right kidney (they would just do more biopsies of the right kidney when they do surgery to remove the tumor tissue from the left). This would be very good news as, although the tumors are shrinking, there is still not a large area of the left kidney that is �free and clear� so they may only be able to save a small portion of it. Either way, we will have to be vigilant about monitoring the health of her kidneys because DHPLN could recur and eventually develop into Wilms tumor again.

Also this week, we got a bit off the original chemotherapy protocol. Frieda is scheduled to get doxorubicin four times throughout the protocol, but she did not get this week�s scheduled application because her �Absolute Neutrophil Count� (ANC) was low. (ANC is the best estimation of the body�s infection fighting ability � calculated partially on the white blood count.) The ANC was not low for normal activities, but was a little low for administering the doxorubicin. Doxorubicin is the drug that has a much larger dosage and is the one that made her nauseous previously. She should get the dosage next week instead. After next week, Frieda will no longer get chemotherapy drugs every week. We are not yet sure how the new CT scan results will affect the schedule, but can now be reasonably certain there will be no surgery in October � and probably not until after Thanksgiving. Her radiation treatment will still most likely be after the surgery unless the consensus is that radiation before surgery could shrink the tumors enough to save more of the left kidney.

So far, our fears of putting Frieda through this treatment have been unfounded. She really enjoys her time at the clinic and everyone that works with her loves Frieda. Although her hair loss is obvious, it doesn�t bother her at all and the anesthesiologist thought it just looks like she has her dad�s hair (which did bother her dad a little).

Friday, October 04, 2002 at 08:48 PM (CDT)

The only revelation in Frieda�s treatment this week is that she no longer needs mom and dad at the doctor�s office at all. As soon as she is called from the waiting room, Frieda walks in and sits on the chair to have her blood pressure and temperature taken. She then takes her shoes off and steps on the scale to get weighed. Mommy�s lap is no longer needed when she gets her blood drawn and the medications injected as Frieda sits on her own chair and helps the nurse administer the drugs.

Frieda is so used to the routine now that the sessions are very easy and painless. Her blood counts are doing well, so everything continues to look good. Even her blood pressure, which had been high (even on her medication) since diagnosis, is now down to a normal range. Overall, everything still seems to be going quite well. :)

Thursday, September 26, 2002 at 10:07 PM (CDT)

This week�s chemotherapy session went quite smoothly. Frieda was very cooperative and even helped the nurse inject her chemo medicine. Mom and dad beamed as the oncologist raved about what a great kid Frieda is. Now that Frieda is used to the routine, she reminds the clinic staff what to do next and helps the doctor with her examination.

Frieda�s blood counts all look good and we will have another CT scan in 2 weeks to measure the tumor�s shrinkage.

***We have posted new Frieda pictures!***

Thursday, September 19, 2002 at 09:18 PM (CDT)

It�s been an eventful week for Frieda. On Monday, she had her 1st CT scan since treatment began and the tumors are showing dramatic shrinkage � they are about 50% smaller on both kidneys. Of course, this is great news and indicates that they will probably be able to save parts of both kidneys. In addition, we learned that Frieda�s oncologist treated one of the few known cases of diffuse hyperplastic perilobar nephroblastomatosis (DHPLN) 24 years ago, so we actually have a doctor that has experience with both Wilms and DHPLN.

Meanwhile, there was a meeting of the �Tumor Board�, a group of doctors that are involved in Frieda�s care including her oncologist, radiologist, and surgeon as well as others. Their conclusion is that there is definitely some DHPLN; but the surgeon is sure that the lymph node he removed was separate from the rest of the mass, which would indicate that there is also some Wilms tumor present. Based on this, the current plan is to stay with the full treatment for Wilms, including radiation, but the surgery is more likely to be in the 12th � 18th week of treatment (November or early December) rather than in the 9th � 12th week.

The good news is the excellent response to the treatment so far and the fact that DHPLN responds to chemotherapy better than Wilms, so this appears to increase the chances for a full recovery. The bad news is that DHPLN tends to leave microscopic bits of fetal kidney tissue that will not be removed and may grow abnormally again. The previous DHPLN patient that Frieda�s oncologist worked with actually developed Wilms tumor twice. This pretty much guarantees that this will be an ongoing concern for us, but that was kind of expected any way.

Frieda is still handling the treatment well; however, this week her hair has definitely started to thin out. We have been amusing ourselves by teaching Frieda how to say diffuse hyperplastic perilobar nephroblastomatosis.

Thursday, September 12, 2002 at 09:24 PM (CDT)

To the tune of a certain Mary Poppins song:

Diffuse Hyperplastic Perilobar Nephroblastomatosis
Even just the sound of it is really quite atrocious
Between it and Wilms, the doctors do not know which
Diffuse Hyperplastic Perilobar Nephroblastomatosis

The week contained an interesting turn of events as feedback from the National Wilms Tumor Study Group suggested that Frieda may not have Wilms tumor. It could instead be Diffuse Hyperplastic Perilobar Nephroblastomatosis (DHPLN). We normally have fetal kidney tissue that turns into adult kidney tissue shortly after birth. In this condition, the fetal kidney tissue instead grows abnormally causing a large mass in the abdomen. It is a very rare form of Nephroblastomatosis; over the last 40 years, there have been about 50 documented cases. Unfortunately, we can�t be sure which it is�so, we know less this week about Frieda�s condition than we did last week!

The National Wilms Tumor Study Group based its analysis on a couple of factors. They felt the growth looked homogeneous, which is consistent with DHPLN rather than a tumor. Also, the part of the mass that was outside of the kidney appears to them to be just a growth from the nephroblastomatosis rather than a lymph node covered with cancer. The original diagnosis and staging was based on that portion of the mass being a lymph node that was engulfed in tumor. At this point, we cannot take another look at the mass that was removed to be absolutely sure of what it was, although the surgeon was 90% sure it was lymph node.

What this means for treatment is that we now have some decisions to make. With Wilms tumor, there is a very specific protocol to follow that includes chemotherapy, surgery, and radiation. If it is DHPLN, Frieda would not need radiation and also would not need one of the drugs she is currently receiving for chemotherapy. These carry slight long-term health risks that she may be exposed to unnecessarily.

As of right now, we are continuing to follow the original protocol. It seems that it would be a greater error to assume it is DHPLN when it is actually Wilms and not give her all of the necessary treatment to cure the cancer. The treatment for Wilms would also address DHPLN (which would develop into Wilms if untreated), so we are not at any greater risk of not taking care of the immediate problem. In addition, with the surgeon believing that he removed a lymph node and the oncologist originally concluding that it is Wilms, it still seems likely that it is Wilms tumor.

In the mean time, Frieda�s oncologist believes that the tumors are continuing to shrink (based on feeling her tummy). The nephrologists (kidney doctors) are still concerned with her high-blood pressure and may increase the dose of her medication next week. Frieda continues to charm everyone and will probably be showing the nurse what to do at her next appointment.

Friday, September 06, 2002 at 09:39 PM (CDT)

This week�s chemotherapy treatment went well. So far, the only side effects she has had from the drugs are some nausea (which she let us know about by throwing up in the car on the way to the State Fair) and constipation. Next Thursday, along with her regular chemotherapy appointment, she will have a follow-up visit to the Renal Specialists (kidney doctors) who saw her while she was in the hospital at the beginning of August. They will be more involved in her care after her surgery.

Speaking of surgery� We believe the surgery to remove the tumors will be sometime in October or November. The size of the tumors is being monitored by regularly scheduled ultrasounds and CT scans. When the doctors decide that the tumors have shrunk as much as they are going to, surgery will be scheduled as soon as possible. This means that we will only have a few days notice prior to the procedure. We hope to have a better idea as to when the surgery might be after the September 16th CT scan.

After the surgery, Frieda will have radiation therapy every day for one week. Her chemotherapy treatments will continue though all of this and are scheduled to be weekly through the end of January, 2003.

*** Pictures were updated earlier this week.***

Thursday, August 29, 2002 at 04:37 PM (CDT)

Along with Frieda's fourth chemotherapy session today, she also had an ultrasound. This isn't Frieda's favorite thing to do, but she did quite well. Frieda also received a drug that takes much longer than usual, so we got to watch an "Elmopalooza" video at the clinic.

The radiologist was not able to measure any conclusive changes to the tumors during the ultrasound, but it is often difficult to calculate the exact size of the tumors by ultrasound. Frieda's oncologist, who had been on vacation for two weeks and hadn't seen her since August 10, said she could tell by feeling Frieda's tummy that the tumor is smaller. We will get a better measurement on September 16, when Frieda is scheduled for her CT scan.

Frieda is still her friendly, happy self and remains a great joy and comfort to her parents and family.

Thursday, August 29, 2002 at 04:37 PM (CDT)

Sunday, August 25, 2002 at 12:26 PM (CDT)

On August 22, 2002, Frieda completed her third week of chemotherapy. She has 26 weeks in total, which should go through the end of January, 2003.

Everything is going well so far. It only takes a couple of minutes to give her most of the drugs she receives and Frieda enjoys playing in the clinic the rest of the time. They have many fun toys for her and she is becoming an expert in blowing bubbles.

Frieda has bilateral Wilms' tumor, which is a rare cancer of the kidneys that occurs in childhood. Bilateral means that it is on both kidneys; most Wilms' tumors occur on only one kidney. However, the odds are still in her favor. Both kidneys are still working and the radiologist tells us the bilateral tumors often respond better to treatment. This is one type of cancer that the medical profession has done an excellent job of treating.

Click here to go back to the main page.

----End of History----