Posted 11:08 PM by Fagan Family

Happy Holidays everyone! It's hard to think how much our lives have changed since last year at this time. We don't like to think about those dark days in the hospital, but it is wonderful to reflect on the marvelous blessings our family has received.

Karsten continues to improve. He's been fighting the flu bug the last few days, but he'll get better. He has started to put things in his mouth and actually takes us to the pantry where we hide the snack mix. He sucks all the flavor out of them and then gives them back. Aside from being carried, his preferred mode of transportation is walking while we hold his hands. He'll take us all around the house if we let him. Every day he acts more and more his age. He is scheduled for another MRI the first week of January, so keeps those prayers coming!

Jacqualine is in the first grade and loves it. She joined the Brownies troop and is going to play basketball in January(I think dad is more excited than she is) She has been a wonderful daughter and has been so very helpful around the house. Karsten just loves his biggest sister and she loves him.

Kayla will turn five next month and is a schoolgirl herself. She is attending a preschool at one of the local elementary schools. She goes to class with several developmentally challenged kids as a mentor for them. She loves it and it's such a good program. She has actually grown socially. She's become a little tease around our house. Her favorite activity lately has been tickling daddy.

Angie has been the busiest of all of us. Somehow she manages to act as Karsten's mother and nurse, make sure Jacqualine and Kayla get to and from school and always do their homework, paint and repaint the house and office, and hold down her new calling in the primary presidency. An amazing metamorphosis has occurred in the past year. When I married her she was simply wonder woman, now she has become something even more amazing. Sure she's still beautiful, and my best friend, but she has become so focused on what is truly important and is able to lend her complete focus on whatever task is at hand. I can't believe how lucky I am to have her.

I'm just plugging along working away. My father-in-law and partner retired in October and he and his wife are leaving for India on an 18 month humanitarian service mission. So now I'm in practice by myself. Angie remodeled the office and it looks great. It's been quite a transition but things are going well. I'm staying busy and that, of course, keeps me out of trouble.

We've had a wonderful year and look forward to an even better 2004. Our family is so thankful for all that all of you have done for our family. We appreciate your prayers words of support and especially your friendship. Life is so much richer when you have family and friends to share it with. We wish you all a wonderful holiday season and new year. We encourage you all to embrace the spirit of this holiday season and carry it with you for the coming year. May the Lord bless you all and we look forward to sharing more good news with you.

With love,

Will, Angie, Jacqualine(7), Kayla(almost 5) and Karsten(21 months)


P.S. We hope to get some new pictures on the website of the family, Karsten and the Girls real soon, so keep in touch.

Posted 10:45 PM by Fagan Family

Last week Karsten started to walk with his push toy! It was an exciting day. We notice his activity level decreases when he is on Cemo, because this week he hasnt wanted to walk as much. We are still giving him his cemo at home, one week on and one week off. We always look forward to his break in between. Karsten was in the hospital for three days a couple of weeks ago for testing. He had to go through a 24 hour PH study to see how bad his acid reflux is( they put a tube down the nose and into the esphogus, OUCH!) and then the following day he went in for his 25 th surgery. Dr Thorne went down his esphogus looking for swelling and took a couple of biopsies. All the tests came back good and now we are once again working on getting his trech out. All we want for Christmas is that trach out. It is hard to imagine that a year ago our lives changed dramatically. When I look back, yes it was the hardest time ever, but we have been so blessed and continue to be. Karsten keeps reminding us how important this life is and how we need to live worthy to live with our father in Heaven again some day. Thank heavens that Families can be together forever.

Posted 10:39 PM by Fagan Family

We bring best wishes to all of you and glad that you are still loging on to get Karstens updates. This past month we have been working with the doctors on getting his trach out. His ENT scoped his esphogus about three weeks ago and the results showed that everything looked good and we should go ahead and schedule surgery to have it removed. The suregery was scheduled for October the 13th. We spent those few weeks preparing him, by covering his trach so he would get use to breathing through his nose and mouth. The first couple of times were awful. Will and I couldnt stand to see him struggle so we would leave the room and let his home nurses take over. After a couple of times he was use to it and did great. It was neat to hear his voice again, but hearing him cry was hard to get use to it. We went in this past Monday for the trach removal and also removal of his internal port ( Number 22 surgery). After the first procedure the Doctor went down to scope everything out and found that his esophogus was swollen and very irritaited and his vocal cords could not be seen because of the inflamation so it was not safe for the trach to be removed; Karsten has severe acid reflex. Luckily it is a problem that can be solved, but will only take some time to heal. If there is one thing that Will and I have learned is that EVERYTHING happens for a reason. We have complete trust in our Heavenly Father. The good news is that Karsten has figured out away to move around by scooting on his bum and just learned how to crawl. He is now getting into cupboards and pulling things out and Mom couldnt be any happier. He is also standing up on his own and can walk with our help. We are amazed of the progress he has made. We love you all and appreciate all your continued suport. Until next time.

Posted 11:33 PM by Fagan Family

Hello! We just got home from a visit with Dr. Gruber(Karsten's neurosurgeon). We were curious to know the specifics of the MRI that was done two weeks ago. We knew the tumor was stable, but we weren't prepared for what Dr. Gruber had to show us. The tumor is substantially smaller than the one done 6 months ago. It was amazing to see the difference between the two images. I'm not an expert at reading MRI's, but it looked to be about half the size. We have been so blessed! We have known all along that Karsten's type of tumor does not typically respond well to chemotherapy, but as usual, Karsten doesn't follow the rules. His sisters have been praying every day that the tumor will shrink. The Lord is answering their prayers. We're not going to be having surgery anytime soon, so we will see Karsten's ear/nose/throat doctor to see about removing his trach. We can't wait to hear his voice.

Karsten is getting close to crawling and he has learned to scoot all over the floor on his behind. He always has a smile for us and you can't help but be uplifted when you're around him. Karsten is a wonderful blessing to our family. Angie and I were remembering what our life was like a year ago before we knew he had a tumor. Things have changed a lot. One thing we do know is that our life is richer because of Karsten and how he has brought so many people together. Please continue the prayers. We know they're working!

Love,

Will, Angie, Jacqualine, Kayla, and Karsten

Posted 1:19 PM by Fagan Family

Hello everyone! I hope you all have enjoyed a very nice summer. Here in North Idaho the weather has been great. We've had lots of opportunities to go up to our family lake cabin this summer, Karsten and all. We've needed this time together as a family after being so separated last winter. We have grown even closer.

Karsten is doing very well. His big sisters teach him new tricks every day, and he loves to entertain us with them. He had an MRI last week and the tumor is stable. We don't know much more than that yet, but that is certainly good news. We are trying to get in to see his neurosurgeon to see what he thinks we should do next. For right now, we'll just keep the status quo. One thing we would like is to get rid of his trach. He has been throwing up a lot and we think the trach is largely responsible. He tries to talk to us around the trach and he is breathing just fine. We have an appointment with the doctor that did the trach to see what she thinks about taking it out. Please pray for good news!

KXLY channel 4 in Spokane did another story on Karsten and showed it last Thursday. The new Children's hospital is opening soon and they gave Karsten a private tour and interviewed us at the same time. They did a good job and the new hospital is fantastic.(even though we don't want to spend any time there) I think there is a way to view the story on kxly.com, but I'm not sure how. We went back to the Children's hospital the next day for another tour for all the oncology patients. We saw a lot of people we hadn't seen since we left the hospital. Karsten was in good form, entertaining them all with his smiles and tricks. He's such a blessing to our family!

We again thank you for all the prayers and support. We know that it is helping, so keep it up please!

Love,

Will, Angie, Jacqualine, Kayla, and Karsten

Posted 4:30 PM by Fagan Family

Hey everybody,

We're sorry that it has been so long since we've updated the site. Since I'm in the ranks of the computer illiterate, our delay should come as no surprise to anyone.

Karsten is doing just great. Two weeks ago he developed a fever and we had to take him into the hospital overnight. The doctor wanted us to stay another day, but we had been vacationing at the lake and weren't going to miss our one vacation for the year. So after some begging and assuring the doctors that he would be OK, we took him back to the lake. He did very well and continues to do so. He is getting stronger and is holding his head up much better. He tries to talk around his trach tube and is just as happy as can be.

Angie and I are getting impatient and have decided to do another MRI in two weeks. We finally are ready to know what the tumor is doing. He's had a whole summer of chemotherapy, and hopefully that tumor is responding. It's hard to look at our little tank of a boy and imagine that he's sick. He just looks too good. We are forever grateful for all of you that have been praying for our little family. We have felt your strength. We continue to pray for a full recovery so that we can have a HUGE party at Karsten's high school graduation in 2020.

Thaks again for all your prayers, and to our friends who continue to battle illness and chemotherapy we wish you the best and want you to know that you're in our prayers.

Love ,

The Fagans

Posted 8:04 PM by Fagan Family

NEW PICTURES! TAKE A LOOK.

NO NEWS IS GOOD NEWS! We apologize for not updating sooner. The summer has kept us busy with many fun activities. I know you are all wondering how Karsten is doing and I am glad to report that he is doing wonderful and one of my wishes has come true, his hair is coming in RED!!!! Each day he is acting more and more like a little boy should act; playing with balls and throwing them, turning the wheels on cars and trucks and best of all teasing his sisters by pulling there hair. We are starting to teach him a little sign language and the girls are so into it and helping out so much. We cant wait for the trec to be gone because he is trying so hard to talk.

Today was a big day at his Doctor appointment; it was tumor clinic. I keep trying to tell them it is not a tumor and just another brain but they wont listen! Anyway, he met with his Neursurgeon, Oncologist and Neurologost. They all said that he looks wonderful and they feel no need to do an MRI just yet. So we dont know what the tumor is doing and thats O.K. beacuse we figure no news is goods news right now and we will enjoy the summer. He also met with his weight watcher lady today (Nutrionist) and he continues to grow in the wrong direction; you cant help but nibble on his cheeks and squeeze him because he is soooo cute!!!

Karsten is moving so much more and is able to stand on his legs for about 5 seconds with support. He is also tolerating being on his tummy for a lengthy period of time and actually rolled over a couple of weeks ago.

We probably wont be updating every week due to the busy summer weeks so we will do our best for twice a month. I hope you enjoyed the new pictures, I know, it is about time! We miss seeing so many of you and hope you are all happy and healthy. We are ever so mindful of our Heavenly Fathers hands in all things. Keep the Faith!

P.S
Thanks again Cameron and Mindy for your help on the website

Posted 2:46 PM by Fagan Family

Karsten continues to amaze us. He has been home now for about six weeks without any scares(knock on wood). He has a slew of physical therapy equipment that he uses to get stronger. We have noticed him putting weight on his legs, which he hasn't done since he went to the hospital in November. His hair is turning red again and he's developing a little attitude to get with it. We're not sure if it's the red hair or just being a boy. We have very little boy experience.

Karsten's sisters have been very helpful. They love their brother and he loves them. They can get him to laugh like know one else. He has started to vocalize a little bit. He learned how to move air around his trach to make those vocal cords work. It's really nice to hear his voice. We've also gotten permission to take him out a little bit. He's been to church the last three weeks and we've been on walks and to the park. Life gets more normal for us every day.

As for the tumor, all we know is that he is progressing developmentally very well. It will still be several weeks before we do another MRI. We're in no hurry, we're just enjoying life with our son.

Thank you all again for all of your prayers and support. It means more to us than you'll ever know. We love you all.

Posted 2:44 PM by Fagan Family

Another good week with Karsten thank goodness, except for one little procedure on Thursday. They found that his port stopped working (couldnt draw blood out of it) so they did an x-ray and found that the tube that connects to the port had come off and it was floating around by the heart. It had probably been there for a couple of weeks and we had know idea and Karsten did not show any signs of stress. So yesterday they went through the vein that is in the groin area to retrieve it. It was a day in day out surgery and all went smooth. Karsten has had the week off from cemo and starts up again on Sunday. It has been so nice not to have to worry about giving him his rat poision for a whole week. I call it rat poision because you have to wear gloves when you give his cemo and put the vile in a bio-hazard container.

We were sitting on the floor has a family talking the other night and Karsten reaches for Jacqualinbe to give her a hug, then reached over to Kayla, then Dadddy andlast but not least Mommy. It was the sweetest thing. His diet is going O.K. His last Docotor visit they had to decrease his feeds even more, poor guy! His home physical therapist ordered him a stander to help gain his leg strength back. It looks like a torturing device but should do the trick, poor guy!

We are still working on getting new pictures up, WE PROMISE! Until next week. xoxoxoxo

Posted 10:32 PM by Fagan Family

Hey everyone! Karsten is doing great. We just wantedto apologize to anyone who sent emails to the website in the past few weeks. It wasn't working and we did not receive them. Everything is working again so feel free to email.

Thanks for your love and support.

Posted 10:28 PM by Fagan Family

Hey everyone! Karsten is still doing great. We just wanted to apologize to anyone who might have sent emails in the past few weeks. The site was down and we didn't receive them. It's working again, so feel free to email us.

Thanks!

Posted 10:13 PM by Fagan Family

We have been home for 14 days now! Can you believe it! Kartsen keeps getting stronger and stronger Our lives are pretty much back to normal just a little bit busier. Karsten has a physical therapist that comes in three days a week. His nurses come in morning and evening to do vital signs. Then he goes in to see Dr. Judy his Oncologist once a week. His last Doctors appointment was a little bit upsetting to him. The Doctor told him he had to go on a diet. He is getting to big in the middle and will make it harder to move around. So we had to cut back his feeds. We like his triple chins and many rolls. He definatley wont be blowing away in the wind any time soon. He is very sqeezeable. We wish we could take him around and show him off but we have to be safe rather than sorry. Im sorry we havent posted any new pictures, we will get on the ball one of these days. I just remembered how to cook a couple of days ago so bare with me.

Every day we say a prayer of gratitude in our hearts. We are definatley enjoying our time as a family and hope to have many more positive days ahead. Keep praying for that darn tumor to melt away. I keep telling the Doctors that is isnt a tumor it is another brain and they just havent seen one before and just think it is a tumor. I can always wish cant I. Have a great week and remember we love ya!

Posted 9:44 PM by Fagan Family

WERE HOME!!!!! We arrived on Wednesday and it feels so good to be all together as a family. We really do appreciate the little things around home. Karsten is doing wonderful. He loves to watch his sisters. He is going to get his strength back from them, I just know it. Karsten has to be home bound for the next few months. We cant take any chances with him getting sick with his immune system still not as strong as it should be. If he even gets a low grade fever we have to take him back to the hospital. We are able to take him for walks which we are so looking forward to when the weather gets a little warmer.

We have alot of gratitude in our hearts for the many, family, friends, neighbors, ward members and last but not least all the Doctors, Nurses and Therapists. You have all helped us get to this point. Keep praying for our boy! THANK YOU SOOOOOO MUCH.

Posted 10:17 PM by Fagan Family

The surgery went perfect! The shunt is now internalized and so far so good. We had superman scrub hats made for Dr. Gruber and Dr. Thorne as they performed the surgery. They are now there good luck hats. They want to monitor Karsten for a a few days to make sure that everything is going well before they send him home; so we are looking at going home this coming Wednesday. Kartsen is recovering amazingly well. When we took him down to the surgery waiting area, everyone was coming up to him and saying , "Hey Karsten we havent seen you in a while, you have grown". It is pretty sad when they know you by first name in the surgery area; Oh well we are glad that he is loved by so many. We hope those of you were able to watch his story on KXLY news. We are waiting for them to post the story on video at KXLY.com. You might want to check it out in a couple of days. Love you all.

Posted 10:49 AM by Fagan Family

Karsten is still doing great everyone, I just wanted to let everyone know that his news story will be aired today(Thursday, May 1) at 5:00 PM.
If you get Spokane stations, it will be on KXLY channel 4. Tune in and watch!

Posted 9:29 PM by Fagan Family

Hello everyone! We have had a great week with Mr. Karsten. He has been off the vent for over a week now and doing wonderful. Last week we had some withdrawl issues with all the narcotics that he was on, but the doctors and nurses kept it all under control. By last Sunday he was back to his normal self. We were all up at the hospital together as a family and took Karsten to the nearby park and played and had a good old time.

Karsten is scheduled for surgery this Thursday to internalize the shunt and put in a new internal I.V. line called a port that will be alot safer for him. I had my sister make Karstens two surgeons super man scrub hats for the big surgery. It should bring them good luck. The Doctors said he will be able to go home by Monday. We really think it is going to happen this time! YEAH!!!!

Last Friday KXLY channel four news came to the hospital to do a short story on Karsten. It will be broadcasted Thursday, we are not sure on the time just yet, but should know by tomorrow. So for all you that live in this area stay tuned and we will let you know on his website what time it will show.

Thanks again for all your love and support. I know that Heavenly Father is listening to your prayers. This Thursday will be a big day!

Posted 3:59 PM by Fagan Family

Happy Easter everyone! After a very scary week, Karsten has turned the corner once again. The Doctor was just in and said that Karsten is as tuff as nails and he is our Easter miracle. As you know from the last update he had three different blood infections. Last Monday he crashed; his lungs filled up with fluid because he was so sick. They had to put him on an osalaitor because his lungs were so stiff, it did all the breathing for him. In order for him to heal they gave him a medication that paralyzes the entire body and he was also sediated. Tuesday the Doctors came to us and told us that his organs are starting to not function correctly and it was only a matter of time. They felt it would be a good idea to brings the girls up to tell there brother goodbye. By Wednesday Karsten did 180 degree turn in the right direction and started making huge progress. They took him off the osalaitor yesterday his organs are functioning normal and his lungs are clear. He is now own a regular vent machine until he is not sediated anymore. We know that this has been a huge set back for Karsten and will be pretty weak for awhile. We are moving FORWARD once again. Karsten gives us so much strength. He definately has a purpose in this life just like we all do. Once again, thankyou, thankyou for your prayers. WE WILL BRING KARSTEN HOME!

Posted 1:14 PM by Fagan Family

A lot has happened in the last week and a half. With a lot of prayer, Angie and I decided that it would be best if we took Karsten home on an oral form of chemotherapy. This will allow us to be home indefinitely. Maybe things can get close to normal if we're all home.

Karsten was scheduled to have his shunt internalized on Tuesday the 15th, but he developed an infection in his blood that really threw him for a loop. It was scary for a few days, but he seems to have turned the corner and is improving. It will take him time to completely recover from the infection, but we hope to get home in a few weeks.

It seems sometimes that we always have something new to fight off, but Karsten continues to fight and show a temendous will to live. We Know that is due in large part to the prayers that you all have offered in his behalf. Please continue to pray for Karsten. He continues to fight so we will fight right along with him.

Thank you again for all your support. We will try to be more punctual about updating the website.

Posted 2:15 PM by Fagan Family

It has been a good weekend. We decided the best medicine for Karsten is when we are all together as a family. Jacqualine and Kayla love playing with there little brother and getting him to laugh. We feel more at home here at the hospital then we do at our own home.

Last Saturday the weather was so nice that we got permission to take Karsten to the park that was right next to the hospital . Heidi our nurse pushed the IV pole, I pushed the stroller and Dr. Lee came along to take pictures. It was the first time Karsten had been outside for a very long time. He was so sontent that he fell asleep in my arms.

Will and I are in the process of making a big decision concerning Karstens long term care. The doctors came to us with some options and we are fasting and praying that we will make the right decision. We were able to go to the temple Friday night and felt great peace that we will make the correct decision. Ive never felt so close to our Savior than I do now. Ive always had a testimony of him, but I feel so strongly that he lives and I am so grateful for his miracle upon this earth. In our home we have a picture of the Savior blessing the little children. I know that same blessing can take place with my son if it is Gods will. I recently watched a movie titled Faith in Christ and it was very uplifting and came at a perfect time when we celebrate The Resurrection. I would love to share the movie with anyone that is interested.

We should have some answers by the end of the week. Thankyou all so very much for your love and support. Keep those prayers coming and positive vibes are way. Love to all!

Posted 8:29 PM by Fagan Family

Thursday, March 27, 2003
It has been a fun week with Karsten. How can life be fun in the hospital? Well, when Karsten feels good his personality is a like a beacon of sunshine to the world. This past week they have been raising the pressure on his external shunt to prepare him for internalizing the shunt by the first of next week. So everyone send positive vibes our way, next week is going to be a big one! So far he is tolerating a little more pressure in his head. I know this shunt thing sounds confusing and it is. Karstens Therapists have been working real hard with getting his strength back. He is now able to sit up on his own and likes to play in his high chair and of course loves his wagon rides. He still is not able to stand and hold his weight up. One of the cemo drugs weakens his joints in his legs. After he is all done with his treatments he will be runing around in no time. This week we have been really working on feeding him through his mouth. It is all pretty foreign to him and he is not to intersted. He is definatley not starving, he looks like a little sumo wrestler. Karten was featured in the Heart Beat ( Sacred Heart Magazine). It was a two page article about the new Oncology department opening in August and how Karsten is there first cemo kid. It had a picture of Karsten with Dr Judy, the Oncologist. It was pretty neat.
Will and I feel real good about the progress that Karsten has made. Our Heavenly Father works in mysterious ways and we have are so grateful for the many miracles that have taken place these past five months. Jacqualine just asked me how Karsten got to be so special and I told her that Heavenly Father made him special, just like he made you special and Kayla special. She wanted to know how come he was on the computer and in a magazine. I told her that Karsten is very sick and people want to know how he is doing so they can pray for him to get better. Thank you for all your prayers. You are all special to us and we are indeed grateful for the many helping hands.

Posted 3:34 PM by Fagan Family

We apologize for the delay in updating his site. Computers and I don't always get along, and mine got the better of me for a few days.

A lot has happened since we last updated. The morning after we last updated you, we had to rush Karsten to the hospital because his shunt had stopped working. We left the girls with the nurse who was here, jumped in the car and took off. Angie made me sit in the back with Karsten just in case he needed help breathing, and she got behind the wheel and took off. That may have been a mistake. Angie turned on the hazard lights and began flashing anyone the wouldn't get out of the way. We got on the freeway and were doing OK until a Washington state patrolman decided that a redhead driving 85 mph in a minivan with her lights flashing and pushing people out of the way was too much to resist. He pulled us over and when we told him what was going on, he offered to call an ambulance for us. We told him we weren't going to wait for an ambulance and he reluctantly told us to go on. He caught up with us about a mile later and provided a nice police escort to the hospital. I thought these things only happened in the movies.

In spite of our experience, Karsten was still in trouble and they took him right into surgery. It turned out that somehow the shunt drain had changed position in the bloodstream. They repositioned the shunt and thought everything would be fine. We were about to go home again two days later when Karsten started having trouble again. Again we went into surgery. They thought that if they repositioned the shunt again that it would start draining. It didn't work. All that day Karsten was in extreme pain because of the pressure in his head. It was so hard to sit at his bedside completely unable to help our son. We were back in surgery that night to externalize the shunt. Even though he began to improve ofter the last surgery, we were devastated because that meant we wouldn't be going home.

Four days later(which was Tuesday, March 11) Karsten was getting chemotherapy again. He has tolerated the chemo well again and we convinced the doctors to let us bring him home for a couple of days. Not too many kids get to go home with an external shunt. We'll go back to the hospital March 17 to let him prepare for surgery to try and intenalize his shunt again. We're praying that this time it will work more permanently. If it does, than our lives can somewhat return to normal as we do chemo on an outpateint basis.

We did receive some encouraging news from th doctors this week. It appears on all the CT scans they've done this week that the tumor is partially calcified. Calcification is a sign that the tumor is being broken down. It was nice to receive some positive news after the discouraging week that we had.

Today is Karsten's first birthday and it feels so good to have him home with us. He has been so happy and so willing to fight and not give up. He is a tremendous example for all of us. As long as he wants to fight, so will we. Our lives have been filled with blessings as we try to learn from Karsten's example

Posted 9:36 PM by Fagan Family

Karsten's home!!!!!!!! We finally got to bring our Superman home March 1. It is such a blessing to have our family all under the same roof again. We were worried that Karsten would be nervous being in a different environment, but he has done very well. His room looks like a mini hospital room with all the equipment and Angie and I are getting even less sleep than before, but it's well worth it. They should give us honorary nursing degrees after this is all over. Of course Jacqualine and Kayla love having their little brother home. We have to fight them off of him sometimes.

We are due back in the hospital for three days of chemo in a week. That's OK, however, because we know that we'll come right back home. We kind of miss some of our friends at the hospital, and we know that the hospital misses Karsten.

We still know that there is a long road ahead, but were digging in for the long haul. As always we appreciate all your prayers and support.

Love to you all.

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.