December 02 and January 03

Seans anc is picking up after his transfusion. As of Monday is was over 600. Still low but heading in the right direction. We are taking off tomorrow in the motor home for a few days. It's time to get away for a little while and relax. We got another bit of bad news yesterday, not about Sean, Thank God, but about our dog Chance. Let me first explain that this dog has been a
member of our family since the day he was born, his mom is our other dog, Brandy. He was very sick and almost died from a lung infection at 2 weeks old, but I bottle fed him and kept him inside with us and nursed him back to health. He has had some lung problems since and has needed antibiotics ocassionally, but we had no idea it was this bad. The vet says he's in
the final stages of a congenitive lung disease and will most likely need to be put to sleep within the next few weeks, at the most a couple of months. We were honest with the kids about it, and they are very upset. We've had the dog since Sean was 2 and although he is taking the news well, he is still crushed. We're just having fun spoiling him for now, Sean likes the idea of the dog eating dinner at the dinner table with us, we'll see if that actually happens or not. He is also insisting I make Chance a steak. We wish we knew why this was all happening at once, Sean's brain tumor, Grammy's stroke, now Chance, but all we can do is cling to our faith and trust that God has a plan, and it will all turn out OK. I did forget to mention that Sean now want's a snake. I am SO freaked out about it, but he want's one so bad I may have to give in. Eewww. I'll keep you posted on that one. Thank's for checking Sean's updates,
and for all the prayers and support. I know that regardless of all that is happening, God is looking over Sean. Besides the low blood counts, and the weight loss, he is doing SO good. I have seen a lot of other kids with Medulloblastoma and some kids needed wheelchairs after their surgery, some have problems with their eyes turning outward, just from having the tumor. The chemo and radiation bring along their own set of problems we may have to deal with down the road, but I just feel like God is watching over Sean. I also continue to pray that Sean has little, if any long term side effects from the chemo and radiation. We'll
update when we get back Monday night and hopefully post some pictures of Sean and the dogs at the beach. I suspect we'll be taking lots of pictures. Thanks for everything, Love, Kelly

Hello again! I know, you're all in shock over three consecutive updates. Well, we just wanted to let everyone know that the transfusion went well and Sean is home now and resting very comfortably in his mommies arms. He received about 300ml of Kelly's blood and he should start to reap the benefits from that tonight or tommorrow. We did have trouble getting him in and we were told next time to call ahead. We knew that, but we also knew they would have just told us to wait and we might not have gotten in at all today. Lavette, our nurse/practitioner was really helpful, but we are still frustrated about how this was handled. We are pleased that we will be starting a PPO soon as we can then choose when and where we go for Sean's treatments. Ok, that's the down and dirty about today, I've gotta run now. We're ordering pizza (at Sean's request) to celebrate another safe trip to and from UCLA (we celebrate all kinds of things now, just get used to it ;-)). Thanks again for checking in. I will be making those previously mentioned changes to the web page this weekend (I hope!!) so keep your eyes peeled....thx ..luv Rich

Ok, I told you I was going to update again soon. We got Sean's labs back late tonight and while his ANC has actually gone up, his counts in some critical areas have gone down a little and the doctor's want him to get a transfusion. So it's off to UCLA tommorrow morning, bright and early for a wonderful day in the clinic. We were told by the on-call Dr. that the hospital is full and there is no room for Sean right now. We were also told there were no appointments for out patient transfusions which doesn't leave us anywhere to go. So we are going to show up at clinic and basically force them to take him. We know from talking to others that this is sometimes neccessary, but it makes for a long day while they try to fit him in. Thats it for now, Seans' spirits are high, but he is very pale and cranky, so we think it's a good thing to get this done and get his counts back up real quick like. I will post again to let all of you know how it goes. Until then we love you all, please continue to pray for Sean, thank you!....Rich

January 22 2003
Hello again everyone. Yes, it has been awhile since our last update. Let me try to catch you up to speed. Sean finished his third round of in-hospital chemo (CCNU, Cisplatin, & Vincristine) two weeks ago, and followed it up with two outpatient shots of Vincristine. He is now done with his chemo for the third cycle. We just have to get through the after affects of the medicine. Sean's ANC is at about 140 right now (down from 1300 last Thursday) with new labs being drawn tommorrow (Thur 1-23-03). We will know more after the new labs, but it looks like he may be getting a transfusion very soon. Kelly donated blood last week just in case, so we are ready if it is needed. Sean had some pretty bad headaches last weekend and for a little while Kelly and I were very worried. We think the headaches were related to his CCNU chemo which has a delayed effect and usually kicks in about two weeks after its given. The headaches were pretty bad though, and for a little while we worried the tumor had come back. I won't waste time telling you how that feels...either you can imagine or you can't, and I don't have the time to explain for anyone who can't. Anyway, he seems to be doing better now, but Kelly and I are still emotionally wrecked. Luckily we have each other(and the kids) to lean on. So, that's what's going on with Sean's treatments. Let me tell you what Kelly and I have been up to. You may have noticed a few new links on the main page. We are going to try placing links to Sean's page on several sites as we feel other people should know about what Sean is going through and hopefully we can help others who are maybe just starting out on this horrible road and need guidance. It is my intention to create a section of Sean's site dedicated to the causes and treatments of this and other childhood brain tumors. Also, we have been researching causes for Sean's tumor and have run across quite a bit of information pointing to toxins in our every day invironments which have been linked to numerous forms of cancer. We have made the choice to remove as many harmful chemicals from our home as possible and we would encourage all of you to do the same. Any way, thats all I will say about that right now. Please check back in a couple of days as I plan to put a whole lot more info about these topics on a new page as soon as I can. Thats all for now kiddies, by the way, I almost forgot to tell you all that we have purchased a Domain for Sean. From now on you can just type in WWW.SEANSPAGE.NET not .com.....say it with me..."NET"!!! this URL will take you straight to Sean's main page. We have run into problems with people making mistakes with the old URL and thought this was best. We wanted a .com address, but some kid in Texas had it so we went with .net . You can still use the old method to get to the main page if you need to. I think that is all for now. I will be getting that other info up and running soon, so there will be another update in a couple of days....thanks again for caring....Love Rich

January 10 2003
Well, here we go again. Sorry for the delay in getting this update out to you all. We have had a couple of minor pitfalls since last we updated. We were so happy that Sean didn't need a transfusion last month, but because he never got that boost, his counts going into his next chemo cycle were a little low. He had his third in-hospital chemo last Friday (1-3-03). He went into the hospital with an ANC of 2400 which is about half of what he started with last time. What does this mean you ask?? Well, he is much more drained from his chemo and his counts are already at 1275. He is more cranky and doesn't want to eat. We are expecting he will need a transfusion sometime next week. Meanwhile we continue to watch him carefully. After leaving the hospital, we decided to head down to Vista Ca. to see Kelly's parents for a few days. Tuesday morning (01-06-03) I was awakened at 5:00AM to the room lights on and Sean sitting in the middle of the floor, putting his clothes on. I asked him to come lay down with me. Right after laying down with me, Sean started hallucenating. He began talking to his brother and sister about video games and TV shows he thought he was watching (even though Chris and Brianna were sleeping and the TV was off). This continued for about two hours and as the sun rose, I noticed his pupils were abnormally dilated. I began to panic and woke Kelly up. We called UCLA and a short time later we were packed and on the freeway headed North. We were instructed to go to Children's Hospital of Orange County as it was much closer than UCLA. We arrived at the E.R. at CHOC and were admitted after a short wait. One CT scan and some blood labs later and we were informed that Sean had overdosed on Scopolamine. Scopolamine is used to control nausea but in too large a dose can cause dilated pupils, confusion, and hallucinations. Well, needless to say we were a little upset, but thank God it is hard to take enough to really hurt yourself. Ok, so no more Scopolamine for Sean. Thats about all the interesting things going on right now. Sean was talking to me today about maybe playing baseball in a couple of months. I told him we might be able to work something out. Oh yeah, Kelly just reminded me to say that we have noticed Sean has a slight tremor in his hands when he's writing and stumbles occasionally while walking. We have scheduled an appointment with a Neurologist from UCLA to talk to us about possible causes. This is not uncommon in kids with this tumor, but still a concern. We will let you all know what we find out. Thats all for now gang...Thanks again for checking back .....love Rich.....P.S. Cousin Joe...please e-mail me with your phone number I would like to call you but can't find the card you sent...thx..

December 31 2002
Happy New Year everyone!! We hope you all had a wonderful Christmas. We sure did! The kids really enjoyed themselves and it was nice to have my parents here for Christmas Eve and Christmas Morning. Sean pretty much got whatever he asked for, but mostly he wanted board games like Battleship and Uno Attack, so he was easy to please. I have added some pictures of Christmas morning to the Photo page, so take a quick peek. On a more serious note, Grammy is still in the hospital and has not made much of a recovery following the stroke two weeks ago. The doctor's aren't holding out much hope, but we are not giving up hope yet. The next week or two will show us wether or not she is going to recover or get worse. Thanks to those who have been praying for our Grammy. We all love her dearly and she has been a major source of strength during our battle with Sean's cancer. Sean is doing well and his ANC continues to go up. As of last Thursday, he was at about 2800. We opted to skip Mondays lab and just get one this Thursday. Sean is scheduled to go in for his third cycle of chemo on Friday morning, so keep us in your prayers. We finally got the "Official" MRI reading from UCLA this afternoon (ONLY TWO WEEKS LATE!) and the results show no sign of new growth or metastices. In short it was a clean MRI and we are thanking God as I type to you. So, I think we are all caught up. We don't have much planned tonight (New Year's Eve). We will probably just hang out and play games with the kids. Thats our idea of a good time anyways. That's all for now. Thanks again for checking back with us. Please check out the Christmas photos.....bye for now...Love Rich

Hello everyone! we wanted to get out an update before Christmas. We have been dealt some very bad news (not to do with Sean, thank God). On Thursday December 19th, Sean's great-grandmother, Barbara Burlison aka "Grammy" suffered a severe stroke. She was found by a nieghbor and taken to West Anaheim Medical Center where she has remained since. We wanted to include this in Sean's update as many of Grammy's extended family and friends check our page and we wanted to help notify everyone. She is recovering slowly and we don't really know yet how bad off she is. We took all the kids to see her yesterday (Sunday) and she seemed to know they were there although she wasn't really responsive. We were told this morning that she was sedated while we were there, which makes us feel a little better since we thought she was just not capable of recognizing us. We will keep praying that she will continue to recover and would ask all of you to pray for her as well. Please feel free to e-mail us with any questions about Grammy. Now, on to Sean. For some Reason Sean's counts dropped a bit from Mondays. His ANC on Thur was about 1020, down from 1360 on Monday. We have been noticing a few bruises on his legs which sometimes indicates low platelet counts. It can also indicate a very busy young boy who's still a little uncoordinated. So we will watch this a little more closely. Blanche came by this morning to draw labs and we will have a better idea how his counts are doing this evening. Christmas is looking good and it looks like Santa may be bringing quite a few gifts. We really want this Christmas to be special for the kids. My parents (Don and Susie) and Uncle Matt are coming to stay the night Christmas eve, so we have something to look forward to. That's about it for now. We are looking more and more into natural cleaning products for use around the house. Now that we are in a groove and things are kind of running on their own, we have started to focus on preventitive measures we can take to ensure Sean isn't exposed to any more carcenogens than neccessary. Look for more info on this subjsct in the future. I am contemplating putting up a seperate page dedicated to this topic, for those who would like more info. That's all for now. Thank you again for checking back with us. God has blessed us with many wonderful friends and we appreciate all of you. Merry Christmas ....love Rich.

December 17 2002
We have more good news to share! Sean had his MRI today and not only did it go really smoothly but we have preliminary results from the radiologist at University Imaging (where the MRI scans were done). We had to take them to UCLA for their neuro-oncologist to read and concur but the preliminary results show no evidence of recurrence or residual mass. So basically it is GREAT news, the tumor has not grown back nor has it spread. We have been thanking God all day and feel so grateful for the good news. We are now going to try and relax, enjoy Christmas and each other. On a side note, some longtime friends of ours, Jerry and Dawn Perez stopped by tonight to drop off some early Christmas gifts. It was totally unexpected but the kids had a great time with their toys. Their visit made a wonderful day even better. Seans ANC is 1326, up almost 300 from Thursday. With all the good news we have a lot to be thankful for and are especially thankful for all your prayers, we really feel like God is answering them. We will try and do another update around Christmas time, hopefully with some pictures, and chemo cycle 3 is scheduled for January 3rd. Thanks again for checking back, Love Kelly

December 12 2002
We just got good news from our home nurse and wanted to share it. Seans ANC on Monday was about 280 which is low, low, low but not quite transfusion territory (at least for UCLA). We figured it would be lower today and we would spend the weekend at the hospital getting a transfusion. Well, it actually jumped up to 1054 and everything is going up on it's own. He is one tough little guy. He asked a few questions about Devin this week which was hard, but he knows that Devin is with Jesus so that helps him feel a little better. He mentioned that Devins cancer "came back" so I think he might be worried about his tumor coming back too but he doesn't want to talk about it too much. I told him that Jesus loves him and we just need to pray, have faith and the Lord will take care of him. On a different note, ever since Sean was diagnosed I have wondered what may have caused it, is it something in the house, is he still exposed, and so on. Then when Seans counts went down I started spraying a lot of Lysol and my lungs felt like they were on fire for a few days. After doing some research on the internet I have learned more than I ever wanted to know about all the carcinogens in our every day products that Sean is still being exposed to. Very scary stuff. I found another mom through a yahoo group whose son also had medulloblastoma and she uses some products that are all natural, no harmful ingredients, so I ordered them. I am starting to wonder if this is something that could have been prevented. One thing I learned is that there is dioxin in Lysol (that's what they used to make agent orange in vietman) and there is formaldahyde in toothpaste. You just don't know it because the companys have a trade name for it. Kids absorb it through the roofs of their mouth. I don't want to go on and on but I am just still so amazed at all this stuff he was exposed to and I never knew it. It's too late to dwell on it, there are some doctors who might disagree and say they don't know what causes it, but I have a feeling about this..... Anyways, thanks for listening to me ramble once again, Seans next MRI is on the 17th, next Tuesday. Our medical group arranged it at a place near our house and our home nurse, Blanche gets to come with us because he needs a nurse to administer the contrast. The MRI tech isn't allowed to put the dye in through Sean's port-a-cath and Sean isn't going to go for getting it in the arm. We thought that we would have to do it ourselves which we weren't excited about so we were glad to hear that Blanche will be able to come with us. We also get to be in the room with Sean during the MRI and he can bring a CD with him to listen to. The only bummer is that we have to personally take the films down to UCLA for them to read. They said we should have the results by Friday the 20th so it will be another long week of waiting. Please continue to pray for Sean and ask that we get good news next week, it will be the best Christmas present ever besides having Sean with us this year after everything he has been through. God is watching over that boy, he continues to amaze me. He still asks for a steak almost every day, he had to settle for beef ravioli last night because he ate all the steak. I don't even care when he's spilling ravioli sauce in my bed at 11:00 pm while he's still up watching TV. I just Thank God. Thanks again for checking back ...Love, Kelly

December 7 2002
Well, I guess it's been long enough since the last update. Not too much going on right now. Sean's counts are dropping and are now at about 1000. This is right on the border of transfusion territory so we are watching closely (of course!) We are preparing for Christmas, as I am sure you all are. We are really looking forward to celebrating Christs' birthday together as a family. We had a great Thanksgiving at Kelly's aunt Susan's house. I don't think any holiday has ever had as much meaning to me as this Thanksgiving did. This may sound a little corny, but for those of you who can put yourselves in our shoes emotionally, appreciate those you love this holiday season and remember what you have to be truly thankful for. On a sadder note, one of our support group families just lost their little boy, Devon Moore, on December 3rd. Devon had been fighting Luekemia for 4 years. We met him and his family during Sean's first stay at UCLA. Devon was getting a bone marrow transplant at the same time as Sean was getting his tumor removed. Devon's parents, Josh and Jennifer, really gave of themselves and did their best to comfort us as we dealt with our fear and uncertainty. Now they have faced their worst nightmare and we are praying for them to find some form of comfort. Please give them a thought and/or prayer during your free time as they are truly in need. Thats it for now. Sean is done with his 2nd cycle of chemo and has an MRI sceduled for 12-17-02. We will let you know what happens. That's all for now. Thanks for checking in again. I will try to get the updates out a little quicker. Thanks again, we love you all....Rich