Sean's Updates

Sorry it's been almost a week since we have done an update. It turns out the cause of Sean's fever was shingles. We took him to clinic on Tuesday and that is when they noticed the bumps. They showed up last weekend but they didn't look like anything so we didn't know what to think. The ER Dr. at Henry Mayo last Sunday didn't seem concerned about them so we weren't worried. In order to treat them Sean had to be admitted to UCLA right away for IV antiviral medicine. The only good thing was that he was considered contagious so we had the room all to ourselves. Sean was not happy about being back in the hospital. He didn't eat or drink much and when the nurses came in he wouldn't talk to them. He would just grunt when they asked him a question. It was also a struggle to get him to let them take his temperature and blood pressure. I think with everything that has happened lately he is afraid to trust them. He was released on Friday and doesn't have to go back unti next week. We will take him to clinic on Friday and if the shingles are all cleared up he will be admitted for chemo. They don't seem to think it's a problem to postpone it for a week. He is feeling better and glad to be home. We went to the movies today to see the Tuxedo and look forward to going to church tomorrow. Pastor Dan came to visit Sean in the hospital and brought him a quilt that was made by some ladies at Christ Lutheran Church. It is beautiful and Sean really likes it. A lady from the childlife department also brought him a whoppee cushion so he could have a few laughs with the nurses. That brought some much needed laughter. Now we will just enjoy the week and try to have some fun before Friday. Please continue to pray for Sean, we are all nervous about the chemo, I hear that the kind he is getting, cysplatin, can make you pretty sick. It is so toxic they have to give it in the hospital with an IV to make sure you get enought fluids to flush it out of your system or it will damage your kidneys. He also has to have a hearing test after each cycle because cysplatin can cause some hearing loss. They expect some loss of high pitch sounds but if he loses too much hearing they may have to lower the dose. One step at a time, I guess. I am waiting for the Dr's office to fax Seans paperwork to the blood donor center, so that they can start taking appointments for blood donations in Seans name. They don't expect him to need it until a week or two after the chemo. Now that we are back home I will follow up and try and get the info posted on Monday. Thanks again to everyone who is waiting to donate blood. Even if it doesn't go to Sean, it will go to another child who needs it. Thanks again for everything. Love, Kelly

Well, against the Doctors orders we all went to San Francisco. Sean loved the airplane ride but once we got there his low grade fever came back. He just wanted to sleep all the time. He went to the kids conference for a while but got tired again so luckily Grandma Joy flew in for the day to watch him. We got a lot out of the conference. It was emotionally exhausting but we are glad we went. We were hoping to stay until Monday but with Seans fever we came back today. We are watching his fever, it spiked this morning and we got it down with tylenol and it has stayed down but I am afraid it will go back up and the Drs are going to want to admit him. We have been disappointed with them lately between their ER and Seans MRI so we will be calling Seans pediatrician, Dr. Kim tomorrow and asking him the possibility of transferring Sean to Children's Hospital in Los Angeles. I was told by someone at the conference this weekend that Children's Hospital treats more brain tumors and I have a friend whose son goes there and she says that they are wonderful and her son hasn't had any of the bad experiences that Sean has had. I am sending a letter to Seans oncologist regardless of what happens and for now I guess we will just have to pray that we make the right decision. There isn't a lot of time as his first scheduled chemo is Friday and it may be harder to switch Doctors after treatment has begun. Just one of many questions that will need to be asked. Thanks again for keeping us in your thoughts and prayers, I'll let you know what happens. Love, Kelly

Well we finally got the call we were waiting for. It was almost 9pm and as our nurse practitioner, Lavette, was finally getting ready to leave the office, she noticed a fax coming through and it was Seans MRI report. She said that it came out GREAT! There is no evidence of recurrence or metastasis. That means the tumor is not back and has not spread. Thank God! She knew how anxious we were so she called. Unfortunately just before she called Seans fever got up to 101 and we had to have the on call Doctor paged. He sent us back to Henry Mayo for more blood cultures and we may have to have the shunt tapped to check for infection. He feels that it may be viral since I had a fever last weekend too, but once the fever reaches that point he has to have the blood cultures done. We are now debating taking Sean to San Francisco with us. We promised him an airplane ride and hate to disappoint him but the Dr. says that if we get there and bacteria grows in the culture he will have to be admitted again. I plan on asking him what the worst case scenario is if we can't get home right away. I looked up UCSF on the internet and they look like they have an excellent childrens hospital and they also have specialists that deal with brain tumors. Not to mention how many Doctors who specialize in brain tumors will be at this conference and staying at our hotel. We are praying that we make the right decision. I hate to make him stay home if it does turn out to be a virus. Please keep praying that his fever goes away and if there is something there that needs treatment, that the Doctors find it so they can take care of it. We are so thankful that his MRI came back clean, Praise the Lord! Love, Kelly

We are still waiting by the phone for the results. We will let you know anything as soon as we do. Thank you so much for caring and taking the time to check on Sean. It helps us to get through this. What we would like to ask is that everyone pray for him. I know you already are but we had a couple of specific prayers in mind. One we are waiting for good results, and are praying that they come soon. And second, we are very concerned as Sean has had a low grade fever off and on for a week and a half. He has had another blood culture and it is negative also but we are still concerned. The Drs have told us it is possibly viral, but we have seen so many Drs over the last week and a half that we feel like maybe they are guessing. We have asked one of his oncologists that we like and feel has Seans best interests at heart to call us back and discuss this but once again we are still waiting. So please pray with us and we look forward to writing a very happy update tonight. I wanted to share a bible verse that another mother who has been through this shared with me and has been comforting so here it is.

September 17 2002

We underwent the MRI this morning, but will not get the results for a day or two. We are a little upset about that, but there is nothing we can do about it. The process was pretty uneventful at first, but ended on the down side. The MRI tech had told us to wait in the waiting room until the procedure was over. After almost two hours, Sean was wheeled out in tears. It seems when they were taking Sean out of the MRI tube, his hand slipped between the table and tube, and as they drew him out, Sean's fingers got caught and pinched badly. Everyone had an excuse about how they couldn't have prevented it and it must be an equipment defect, but no one really said "hey, it's our fault and we're sorry". We were very upset, and it first we thought his fingers might be broken. We forced the doctor there to send us for an x-ray which showed no sign of permanent damage. We had some words with the nurse, doctor, and tech, and we were definitely less than satisfied with the quaility of care. We took Sean to Chuck E Cheese's to take his mind off of it. That's all for now. Thank you for your prayers, I will update all of you as soon as we get the results. Also, I got a copy of the first MRI showing the tumor from a profile. I will put that on soon as well,thx for checking in....love Rich

Just a brief update, Sean had to return to the UCLA emergency room last night right after I updated the page. He got another fever and his oncologist wanted him to be seen by a Neurosurgeon to check his shunt for infection. We got to UCLA at about 2:00am and the staff took several blood cultures and a urine sample. Sean was also seen by the on call Neurosurgeon who said he wouldn't touch the shunt until all other possible causes of infection could be ruled out. He said there was just as good a chance he would introduce infection if he tampered with the shunt. We are praying that the infection will not be related to the shunt as that might mean possible surgery. Please keep Sean in your prayers. He has been through so much in the last week and it's wearing on him. Tommorrow is the MRI and I don't think I can sleep tonight. I am sure it will return clear, but I still can't relax. If it was my illnes I would probably be resting fine, but I feel so helpless and I know many of you share that feeling. Thank you again for caring and loving our boy. We will definitely update the page one way or the other tommorrow. I am going to try and place those pictures from the Michael Hoefflin event on the photo page now, so come check them out. I will also see about getting those camping pics up soon as well. Thats all for now, thanks again for caring...love Rich

Well, it's been a few days since we updated, so here we go. We are all getting over a minor flu bug, which we believe may have caused Sean's fever and subsequent trip to the hospital. There is still no explanation from the doctors at UCLA as to how the Henry Mayo hosptial blood culture came back positive for Strepp but the UCLA blood culture returned with nothing. The belief is that the Henry Mayo test was tainted. We will probably never know now, but it has been educational. Sean is feeling pretty good right now and has been really effectionate lately. We had a fun night on Saturday at the Michael Hoeflin Foundation "Evening Under The Stars" event. Sean looked so handsome in his suit. He was presented with a trophy that said " Sean Anderson is our Hero" in front of about 1000 people. The event was really nice and I think they must have raised a lot of money. Check out the pictures on the photo page. Other than that, we have an MRI on tuesday the 17th, so please take a minute or two to pray for good results. Sean will have to be put under for the procedure as it will take about two hours and he will need to be absolutely still. Everytime they put him to sleep it scares the heck out of us! That's it for now, we will be writing another update for sure Tuesday so check it out. Thanks again for caring....love Rich

I will start with how wonderful our trip was last week. It was nice to just relax and take the kids fishing, or even just play cards, things they wouldn't have done at home because the TV is on. Unfortunately, after we got back Sunday night, we noticed Sean had a fever of 102. His oncologist had us take him to the nearest emergency room for a blood culture. He explained that we had to make sure the port was not infected. Sean was not happy about going, especially at 10:30 at night but he was a trooper and let them do what they needed to do. We were told we would have the results on Wednesday so we were surprised when the oncologist called us Monday night saying that something grew in the culture. That means there is some type of bacterial infection in the blood and we needed to take Sean to UCLA right away for IV antibiotics. They are trying to narrow down what type of bacteria it is and whether or not it is the port that is infected. Meanwhile, we left the house again at 10:30 last night to admit him into the hospital for 48 hours. He was so tired but once again my brave little man let the doctors and nurses examine him and start his IV line in the port without complaining. He was relieved when they finally let him go to sleep. Rich stayed the night with him and I came home, so we will be trading off in a few hours. Please continue to pray for Sean and ask that this infection clears up quickly so that he can come home and be with his family to enjoy the rest of his break from treatment. I am very thankful that we had such a great week together before this happened. I know that it could have been worse, it could have happened in the middle of our vacation and we would have been so far from his doctors. We didn't even have cell phone reception where we camped, we had to hike to a pay phone, so I am once again reminded that God really is watching over Sean. Love, Kelly

Sorry it's been so long since we've done an update, the time is just flying by. I guess I will start with how nice it is not having to see any doctors or nurses. I'm very thankful for them but the break is nice. Sean is doing really well. He went to school for a few days last week when he felt like it. We also made it to Disneyland. It turned out to be a really nice day. Sean absolutely did not want a wheelchair, he made that very clear, but halfway through the day he finally admitted that his legs were tired so we compromised and rented a stroller. We also got him a special access pass that allowed him (and us) to go to the loading platform without waiting in line as long. We went on every single ride he wanted to go on at least once. We were even done in time to watch the fireworks so it turned out to be a really great day. Then we went to Grandma and Grandpas again to pick up the motorhome. It needed a lot of work, but thanks to Grandpa Bill it is ready to go to Mammoth next week. We are all looking forward to it. One thing we are still concerned about is Seans eating. He is still not eating enough to gain any weight. He pretty much refuses to eat breakfast, and by lunch he's hungry but nothing sounds good to him. I usually try to get him to have some sort of snack. I find myself resorting to threats of turning off the TV or taking away the gameboy to get him to eat. As the day goes on he will start snacking and by dinner it gets better. Before bed he will sometimes have cheese and crackers or ice cream but not very much. We want him to gain as much weight as possible before he starts chemo. I have tried all sorts of smoothies and ice cream shakes, ensure, you name it. He won't drink any of it. He will drink chocolate milk if I don't add anything else to it and somehow he always tastes it when I do. Please keep praying for Sean's recovery and also please pray that he gets his appetite back. Check out the Disneyland pictures and we'll talk to you all when we get back next week. We are very blessed to have such wonderful family and friends that care so much about our sweet little boy to keep checking on him and especially praying for him, thank you all, we love you. Kelly

Sorry we didn't update the page on Tuesday as promised but it seems like the week kind of got away from us. Sean has been doing great. We had a good weekend at Grandma and Grandpas house and we learned that Sean really likes french toast. He also ate all their ice cream and Grandma had to go to the store for more. We are so happy to see him eating again. Tuesday we went back to the Dr. for his checkup and we got to see Dr. Moore. He is really kind andgentle with Sean and we like him a lot. He says Sean looks really good, and to just enjoy our break. He said no blood tests, no checkups, nothing besides the MRI on the 17th, just enjoy the time off with each other. Needless to say we are very excited not to have to drive to UCLA for a while and to have thefreedom to take off in the motorhome whenever we feel like it and not have to be back for any appointments. After the appointment we went to a bbq that was being held for Sean at Century Sheriffs Station. It was almost overwhelming to see everyone, most of them we have never even met, there just for Sean, donating their time and money to help him. It was something we will never forget. I don't think Sean knew what to do with all the attention focused on him, and he took the opportunity to ham it up a little bit. It turned out to be a really good day. Now we can focus on having a good month. We have until September 26th, which is the day Sean is scheduled to be admitted into the hospital for his first cycle of chemo. They say to expect to be there for 2 to 3 days. After that point we will need blood donors. I will be looking into how that all works within the next couple of weeks. If anyone is interested in donating to Sean, email me and I will send you the information when I get it. If you can't get to UCLA to donate to Sean, go to the red cross and donate anyways, I know there are a lot of other people who need it. We have a busy but fun month planned, I'll still try and do an update every week or so with all the fun we're having. On our to do list is Disneyland, Mammoth in the motorhome, San Francisco for a brain tumor conference (the kids get to be spoiled by grandma while we go) hopefully the beach, and we were invited to a fundraiser for the Michael Hoefflin Foundation for Children's Cancer. Sean will get to meetJonathan Elias from channel 2 news who is the Master of Ceremonies at the event. I hear it is sold out but if you want to learn more about it you can click here. That's about all for now, just keep praying, I know God is listening, I can see it every time I look at Sean and see how much better he is doing. Love, Kelly

August 13 2002
Today was Sean's 8th vincristine shot, the last one in this cycle. We now have a 6 week break, although he still has to have weekly labs drawn by the home nurse, and he also has to go in again next Tuesday to see the Doctors for a quick check up. We now have a new date for the MRI, it has been rescheduled to September 17th. The original MRI was for the head only and then they decided that as long as he was having it done, it was best to do the spine also. I am glad because then there will be no wondering, we will know for sure that nothing has spread to the spine. The only bit of bad news is that Sean will need anesthesia for the MRI because with the head and spine, it will take almost 2 hours and that is just too long for him to lay completely still. Other than that, today went really well. He has not lost any more weight, but he hasn't really gained any either so we will be working on that. He is looking forward to going to his grandparents house in Vista this weekend and hopefully we will be borrowing a motorhome from them so we can go on some trips during the break. We'll update again next Tuesday and let you know how the check up went and hopefully Rich will have the rest of the Shaver Lake photos on by then. Love, Kelly

Thats right everyone, we made it!!!! Sean is officially done with his radiation treatments. We are so happy. How can I even start to describe how good it feels to see Sean make it through this. Todays treatment went by quick. No special fanfare or anything. We arrived at about 7:30am, and were taken right in. Dawn wasn't there today so James ran the show. He and Jamie got Sean set up and Sean was done after about 10 minutes. When it was all over, James presented Sean with a diploma for completeing his treatments. It was a little emotional there for a second. We left for home, and Sean decided he wanted Chuck E Cheeses as a treat. We went home for a while and took a short rest breack before heading to Chuckies place. We had a good time and I might add, I played Sean to a 1-1 tie in air hockey (never mind that he scored 5 of my goals for me by accidentally knocking the puck into his own goal). Sean had less luck against his sister who beat him for control of the table. After Chuckies, we went home and rested. We wanted to go to the movies and see Spy-kids 2, but Sean was pretty wiped out so we opted to take a nap for a while and go in the afternoon. We went to an afternoon showing of the movie and we all enjoyed spending time together. Today, Palmdale Sheriff's station had a raffle to raise money for Sean's Sheriff's Relief Fund. We almost went, but Sean wasn't feeling well after the movie (sorry Donna) I ended up going to school, but we felt bad for missing it. Sean felt better after some rest, and managed to finish his homework. We are planning to send him to school tommorrow (Fri 08-09-02) and he will need to turn in his work then. Now that radiation is over, we hope to send him to school more often. Thats it for now. I probably forgot something , but have no fear. When Kelly reads through this she will probably have some additions. Also, I haven't mentioned Emily Schram lately, so here goes. The Doctors say that there is definitely something there but they don't beleive it's a tumor. They are getting a second opinion just to be sure. Other than that, Emily seems to be doing well. Please continue to pray for her. We will be keeping her in our prayers as well. Thats it for now kids, thanks for checking back yet again, and for giving Sean such a feeling of love in his time of need. We love you all. Thanks again.....Love Rich

August 7 2002
Today after treatment Sean went straight to school. He was there by 8:40, just in time for school pictures. We stayed close to the phone in case the school nurse called, but he stayed the rest of the day. His teacher said he did great, but he did get tired. He even went to his friend Connor's house after school for a little while. He was very excited to see his brother and sister who came home from vacation today. We will have a little birthday party for Brianna tonight since she was gone on her birthday. Sean helped me wrap her presents and promised he wouldn't tell her what they were. We'll see how long that lasts. We are so excited about tomorrow, we are keeping Chris and Brianna out of school one more day so they can be there for Seans last treatment and then we'll do something fun afterward. Thanks for sharing all of this with us, it means a lot. Love, Kelly

August 6 2002
Only 2 more radiation treatments left. We saw the radiation oncologist today for one of our last visits with him. Then we went upstairs for chemo. Sean didn't lose very much weight, only about 1/2 lb. While waiting for his chemo, Sean ate a granola bar. Then afterward he insisted we go to Denny's. I suggested waiting, but he really wanted to go. He ate a grand slam and drank a hot chocolate. He was in such a good mood and it was fun to watch him. He even went to school for an hour in the afternoon. He did need an afternoon nap though. Thanks for all the prayers and support. Talk to you tomorrow. Love, Kelly

Well, it's Monday night and everything is well. Sean had another good day on Friday. He was excited to get to treatment and get it over with so he could get on the road to Shaver Lake. I left Thursday afternoon with Chris and Brianna in Grandma and Grandpa's motor home. Kelly stayed home with Sean and drove up after Sean's treatment. We had a great weekend !!! Sean was a little cranky after the long drive, but soon cheered up. We had a nice campsite near the water. We had to walk down a steep hill to get to the beach, but Sean handled it like a champ. We didn't realize how much Sean liked being in the boat. Sean's cousin Doug brought his ski boat and Sean couldn't get enough of it. Sean didn't want to play in the water too much as it was a little cold for him, but he had fun in the boat and playing frisbee with the dogs. We had some good eating and Sean seemed to eat pretty good. We all slept in a tent and believe it or not Sean slept great. By Sunday, Sean was smiling and laughing just like before the tumor. I think this trip really helped us all feel a little better. Check out the pictures on the photo gallery page. Treatment today (Monday 08-05-02) went smooth and we were back home and waiting for our home nurse to draw labs by 8:45am. Sean is excited as he only has three more treatments left. We are not looking forward to the high doses of chemotherapy, but at least they will be spread out. We are watching Spy Kids right now and are enjoying an evening with just Sean. Brianna and Chris are still at the lake and will be home Wed. night. We will miss our baby girl Brianna on her birthday (08-06-93) but figured we could celebrate when she got home. So thats it for now. Hope all of you are doing well. Thanks for checking back again.....love Rich

August 1 2002
Only 5 treatments left, yes we are counting down. As usual Sean was done with his treatment by 8:00 and on his way home. He didn't have much of an appetite today but he did manage to eat a little. He also managed to take a 3 hour nap. When he woke up we went to SCORE and then came home and did some homework (it was a struggle to get him to do it, he would rather watch TV.) We also played go fish and packed for a quick weekend trip to the lake. Rich, Chris and Brianna drove up today with Grandma and Grandpa and Sean and I will meet them up there tomorrow. We will have to be careful to keep him out of the sun, but it will be nice to get away for a couple days. Thanks for the continued prayers and support and we'll do another update Monday night. By then there will only be 3 treatments left! Love, Kelly