Posted 11:40 PM by Fagan Family

Well, we're a week closer to going home. Karsten continues to tolerate the after effects of the chemo very well. His white blood cell counts are down but they should begin to come back up tomorrow. He's scheduled to have his shunt internalized on Thursday. If all goes well, we'll be home by Sunday. We're in the process of getting home nursing lined up to make sure he's well taken care of(and maybe to give Angie and I a break every now and then).

We had a pretty busy weekend at the hospital. Karsten was doing fine, but we had our four-year-old daughter Kayla in the same hospital for surgery on Friday and Saturday. She had her tonsils and adenoids removed. They put her in a room at the end of the hall from Karsten. She has done fine, but Angie and I wore a nice little path in the hall going back and forth making sure both kids were taken care of. I don't know why we did that to ourselves, but we're glad she's doing better.

We continue to rejoice over Karsten's improvements and we know that getting him home with his sisters will only help more. Thank you all again for your prayers and continued support. We look forward bringing more good news to the next update.

Posted 9:15 PM by Fagan Family

Hello again! Karsten finished his 3rd round of chemotherapy yesterday and is tolerating it very well. He continues to amaze us all. Each day his strength improves and we see more and more of the little boy that began this ordeal over 3 months ago. Two days ago the doctors checked Karsten's vocal cords and discovered that they were both working. One is a little sluggish, but this a wonderful improvement from two months ago when neither was working. We can now give him a little food by mouth to encourage him to suck and swallow.

We did suffer a minor setback last week, however. The day after his shunt was internalized he began having problems again. His gut is not able to absorb the fluid from the brain quickly enough. His head began to swell again and they had to remove the shunt drain from his belly. After he fully recovers from the chemo, they will place a shunt line into the vein that drains directly into the heart. Although not ideal, this will allow the fluid to drain easily from his head. We are optimistic that this way will work.

We can't come home until his shunt is internalized and working properly. This means that Karsten's trip home from the hospital will be delayed by about a week. We hope to be home and doing chemo on an outpatient basis in about twelve days. Keep praying everyone! We know that it is only through our faith and prayers that we can help Karsten and are very grateful for all the prayers that offered for Superman.

Posted 10:47 PM by Fagan Family

If this is your first visit to Superman's wewbsite, please check the February 3rd posting to see a full update of Karsten's condition.

We have more good news! Karsten has been off his ventilator and breathing on his own for a week now. He's doing great. His first day off of the vent we took him for a wagon ride around the pediatric floor. It was like a big parade of doctors and nurses. People were coming from everywhere to see our superman and they couldn't believe he was actually out of his room. All we needed was a band playing.

Today the doctors and nurses are talking about getting Karsten home. He had surgery today to internalize the shunt in his head(the fluid will drain into his abdomen). He's recovering very well. They plan to start the next round of chemotherapy within a week and get him home after that. Hopefully he will do well enough to do his chemo on an outpatient basis. He'll go home with a nurse and a ton of equipment. It will be overwhelming at first, but well worth it to be at home together as a family. We'll take Karsten to the hospital once a week for a small dose and every 21 days for three full days of chemo. Life will consist of many packed suitcases!

Occupational and physical therapists have been working with Karsten daily and he's making great improvements in his strength. He can now hold his head up on his own with pretty good control. He's really close to sitting on his own. Rolling over is difficult because he's got so many tubes in his chest and tummy. We are excited about these improvements because after his first few surgeries he was just like a big newborn developmentally.

Karsten loves life and has a smile for everyone. He loves to make kissing noises and waves to everyone he sees on his wagon rides. We have learned so much from Karsten and are so grateful that Heavenly Father sent him to our family. We continue to be grateful for all the prayers and support that you offer to our family. May God bless you all.

Posted 11:57 PM by Fagan Family

February 3, 2003

Welcome to Karsten's(aka Superman) website. We apologize to all of our friends and family who we have not contacted in the last few months. As you can imagine, our world has been turned upside down. We thought this might be the best way to keep everyone informed about his progress. We intend to update the website weekly, but we'll see how it goes.

Well here's update number one:
(They won't all be this long)

Karsten was born March 15, 2002 after a difficult pregnancy that required Angie to be on bedrest for 2 months. Needless to say, Will learned a lot about how not to be a mom during that time. But Karsten was a seemingly healthy little boy just like any other. In October Karsten developed a fairly significant head tilt and wouldn't straighten his neck. We took him to the pediatrician and were assured that it was just a routine case of torticollis(stiff neck). We began some physical therapy and in the meantime Will scoured the internet for information on torticollis. One of the first articles he found was a study on children with brain tumors that also had torticollis. We quickly dismissed that possibility because we assumed that things like this only happened to other people. Our journey was just beginning.

One week later Karsten began vomiting and again we weren't overly concerned because his sisters had just had the flu and we thought that he did too. After nine days of vomiting and several doctor visits, Karsten was admitted to the hospital here in Coeur d'Alene on monday, November 4th. He spent five days there and seemed to be feeling better, even though he was still vomiting. They sent us home friday night with the assurance that what he really needed was time and rest.

Monday morning Karsten was still vomiting and seemed to be worsening by the minute. This time they sent us to Sacred Heart Medical Center in Spokane, WA. Still nobody had any answers. Wednesday they did a CT scan of the head and discovered the brain tumor. The next morning Karsten was in surgery for five hours while they removed as much tumor as they could in an effort to determine what we were dealing with. We were fortunate to have a wonderful pediatric neurosurgeon who is sought out all over the Northwest. They were only able to remove 75% of the tumor because of its location. One week later they placed an internal shunt to remove pressure from the brain, and within two more weeks he had three more surgeries. He had a feeding tube placed in his stomach, an internal IV line placed, and a tracheostomy performed to aid in breathing.

The tumor was determined to be an ependymoma, the third most common brain tumor in children. The ideal treatment for these tumors is removal and/or radiation. But radiation is not an option for children under three years of age. That left us with chemotherapy as an only option. So we prepared ourselves for that. We spent the next two weeks getting Karsten strong enough to tolerate the chemotherapy.

Two days before Karsten was to begin chemo, he began having trouble breathing and his heart rate was very erratic. The doctors performed an MRI and discovered that the tumor had grown completely back to its original size. In just five weeks! At this point the doctors gave us very little hope. Surgery was not an option, chemotherapy was very risky because he was not doing well, and the only other option was to do nothing. Any parents reading this might imagine our dismay that doing nothing could even be an option. We told the oncologist that we were not going to sit by and watch our son die. The next day we began chemo even though the doctors were not hopeful.

The week following chemotherapy was a breeze for Karsten. The 2nd week was not so smooth. He was on a ton of medications and developed severe swelling in his abdomen. Karsten had developed a hole in his intestine and his abdomen was filling with bile and stomach acids. The doctors again were not hopeful. Surgery was performed to repair the hole and everything seemed to be stabilizing until he developed an infection in his blood stream. We treated the infection and again things began to stabilize until his shunt quit working. We rushed him to sugery at two AM to replace the shunt. We did get some good news the day before Christmas. They performed and MRI and discovered that the tumor had begun to respond to the chemotherapy and was shrinking.

We were worried though because we had to delay the second round of chemo by three weeks because of all of his setbacks. We did finally begin chemo again on January 23rd. This round has been relatively easy for Karsten. He has been remarkable. Each day he gets stronger and happier. Other than what the lab work says, you would never know that he was getting chemo. He smiles, plays, tries to talk, and kicks his legs. Basically, he's acting like a baby again.

Karsten is truly a miracle. In the past three months he has had ten surgeries and numerous other setbacks. The doctors seem amazed at his progress. We often overhear the doctors muttering; 'That's one tough little boy.' Of course we've known that all along. The care he is receiving at Sacred Heart has been amazing. The doctors, nurses and support staff have been wonderful to us. We know that Karsten has a long way to go, but we remain optimistic for the future. Our lives are forever changed, but we hope to exercise enough faith to grow from these trials. The Lord has richly blessed our family through all of this. There has been a tremendous outpouring of love and support from friends and family for which we will be forever grateful. We know that we will get to take him home soon. His sisters Jacqualine and Kayla have been having dreams of Karsten coming home. How can we deny their faith.

We appreciate all of your prayers and support. Please continue to pray for our son. For all of you that are facing your own trials, you will also be in our prayers. We know that it is through the tremendous love of our Heavenly Father that good things happen in our lives, and we all need those good things. The Lord will bless us, there is nothing I am more sure of.

Thank you all and we love you. Please check in weekly for more updates and pictures.

P.S. We want to thank Cameron and Mindy in Atlanta, Georgia for setting up this web site. Thanks to Dr. Gary Lee(one of Karsten's doctors) for most of the pictures you'll find on this website.
P.P.S. If you have a copy of the Book of Mormon, please read Ether 12. It has helped us tremendously through this.