Sean's Updates

OK, here's a quick update. We took Sean in for his MRI on Monday the 15th of November. We were all set to go see our friend Doug the technician and just get it over with. When we arrived we found out our favorite tech was working in a different office now and we would have to "break in" a new one. It's kind of funny in a way and I feel sorry for the young lady who replaced Doug. She tried to be helpful, but we were always a step ahead of her and I think it threw her off a bit. She would ask him to take off his shoes right as I was standing up with them. I grabbed his blanket and covered him just as she turned around to ask if we wanted a blanket. I let her off the hook when she started telling us about the procedure and we just let her know that we knew what was going on. The scans themselves went pretty well and Sean didn't move much. Unfortunately when she braced his head his chin was a little too close to his chest and sometimes when he swallowed ithis head would move. Needless to say, the techs don't like that much, so we had to redo one of the scans, but no big deal, our Seannyn boy can handle it. We levet the MRI and of course I tortured myself by trying to read the MRI's myself. I do it everytime, and I always swear I'm not going to do it the next time, which of course conveniently gets forgotten when the next MRI comes along. Kelly took Sean to his check-up with Dr. Fieg from UCLA on tuesday. Every thing is good excet for a low level of Thyroid, which may present some challenges in the future. While she was there, Kelly asked if they had received the preliminary reading from University Imaging yet. The office called over and had the results faxed to the clinic. Dr. Fieg then read it and let us know that at this time they don't see any signs of recurrence..YES!! I got the call from Sean after they had left the clinic and he passed on the good news. When Sean called, he actually sounded like his old self a little. We haven't said too much about how this whole thing has affected Sean, but I don't have the time right now, so I will have to follow up with you all later. For now, it is enough to say that he is feeling and looking good, and he is healthy. I think that's about it for now. Next time I will try to explain some of the ways that Sean has been expressing his anger and bitteness. The picture above was taken yesterday at Sean's soccer team party. Speaking of pictures, I found out Comcast has changed their policy or something, because we get 25MB of space for each user ID (up to 5), not 25MB for the whole group to share, so we actually have more than enough space for our Disney cruise pictures, so look for those soon. That's all for now. Thanks for everything guys and gals, we couldn't have gotten through it without you. Love..Rich

Well I'm thinking some apologies are in order. You know how they say time just flies when you're having fun? Well "they" are right. We sincerely apologize to all of you for not updating the site. Things have really been crazy (in a good way) and every time we think to update it we get side-tracked again. It has gotten to the point where we haven't done anything because there is so much to tell you that we don't know where to start. Well, I guess I should just start where we left off. I had to read the last update to see what we last told you about which looks to be about Sean and his growth hormone levels. Well, about that then, Sean has been taking nightly injections of growth hormone for about 4 months now. We had an endocrinologist appointment a month or so ago and in just the three months that he has been on the hormone he has gained about 4-5 centimeters. Compare that to the 2 centimeters he gained in the two years prior and you can see that we have some pretty good growth here. We are very excited! We had to buy him new shoes because he finally (after 2 1/2 years) outgrew his old ones. Sean is in really good spirits and we have just been having the greatest time with him and Chris and Brianna. We have also been playing host to my sister in law and her children while they find a place near us. It's been a little crowded and at times the kids have had problems, but mostly it has been really nice to have a house full of people enjoying being together and just loving life. Sean finished up T-Ball back in June and has moved on to soccer...that's right I said "SOCCER"!!! It has been so awesome to watch him out there giving his all. It is still pretty noticeable that he has some coordination issues, but he is gradually overcoming them. I am assisting the coach and so get a lot of time to watch Sean up close, and I would have to say that he is playing better each week and that his skills are growing more quickly than those of the other kids on his team. The way I see it, it's only a matter of time until he gets to where he's even with the other kids, but just having him out there is a kind of joy that is very difficult to describe, no matter what skill level he is at!

We have been busy doing lots of stuff lately and are planning for the holidays as I write this. We have put a down payment on a cruise to Mexico in January. We had so much fun on the Disney cruise last January that we wanted to do something like it again. This next cruise won't be Disney, but we are looking forward to it. Sean signed up for basketball last week and in order for him to get on a team I had to agree to coach (OH DARN!!) so we will be starting that soon. We have our six month MRI coming up on November 15th, so please pray for good results. Let's see what else?? Oh, we had a little bit of a scare recently. Sean has been getting very angry lately, especially in the morning and in the afternoon. It got so bad that we were thinking we had better call UCLA as it seemed to us to be the "behavioral changes" we had been told could be a symptom of recurrence. Well after a couple weeks of this, Sean finally let on that he was having problems with a kid at school. This particular kid and a friend of his are rather large and full of themselves and have been bullying a number of kids including Sean. Well evidently, one of the kids pushed Sean out of line and almost knocked him down. Sean was very upset and told us about it so we called his teacher. She said she had gotten a couple of other similar complaints on these this boy and his friend. She called his parents and although they told the teacher they didn't think their son would do something like that, when Sean went to school the next day the boy left him alone. Sean came home from school that day in a great mood with no yelling or anger. He has been fine ever since and has admitted that he was really upset about going to school everyday because of the way he was being treated, but now things are better. It explains the anger and makes us feel better, but we are still anxious to get the MRI to confirm that there is no recurrence. I'm sure everything will be fine, but It will be nice to know. We were able to go to the Lombardi Ranch for pumpkin painting and rides courtesy of the Michael Hoefflin foundation for Children's Cancer. We love these guy!! They still treat us like family even though they have many more needy families now. I know that I am forgetting a million things and when I get home (I'm at work right now), Kelly will read this and point everything out to me, but I wanted to get something out to you. Again let me say how sorry I am about not keeping up with the site. It is no way to treat friends and we are very thankful for all that you all have done for us. I will try to get back on in a few days and post a couple of more recent photos. We still have Disney cruise photos, but I need to find another site to store them on as we are out of room. That's all for now. Thank you again for being there for us.

June 1, 2004
We got the results of Sean's growth hormone tests last week. His cortisol level is normal and his thyroid functions are normal. He is considered growth hormone deficient because he measured 6.4 and anything under 10 is deficient. This means he will not grow without daily injections of growth hormones. It takes several weeks to get this set up, I guess it's very expensive and takes insurance approval. Once everything is set up, someone will come out and train us on how to use the pen-like injector. It sounds very easy and painless. Sean was quite upset about this, but he asked his Grandpa Don who is diabetic if it hurt and he said no. He also gave his Grandpa his insulin injection and saw how easy and painless it was. He's been much better since then. We scheduled his next MRI for June 9th at 3:00. So if everyone wants to start praying, we would really apprecciate it. I have been kind of down lately because I have heard of a few medullo relapses from my online support group the past couple of weeks. I feel like I need to get Sean's MRI done and overwith so I can relax and enjoy the summer. I have faith that everything is OK, but we are coming up on three months, so Rich and I always tend to get a little jumpy. We are borrowing a friends motorhome and going on vacation the day school is out so we are looking forward to that. Other than that, things are good. Sean is looking forward to summer vacation and our vacation. He is having fun the last few weeks of school, although he got hit in the head playing dodgeball last week by a kid who was angry because it was Seans turn and threw it at his head on purpose. I was told that his teacher and parents would be notified, but I'm not sure what happened because they live close to us and have not heard anything from them yet. We also had another close call with Sean hitting his head, another reminder to always wear a helmet when on a scooter. We were walking over to Blockbuster on Sunday night and the kids were on their scooters when Sean hit a dip in the asphalt and fell and hit his head. Rich saw it bounce against the ground, but because his helmet was on, he didn't hurt himself. Otherwise it probably would have been a trip to ER. So it was a pretty good lesson for our oldest son Chris, who thinks he's too old for a helmet. I'll update again after the MRI. Thanks again for checking on Sean and for all your prayers. Love, Kelly

I wanted to update yesterday, the two year anniversary of Seans surgery but had a final exam and never found the time. We actually celebrated his two year anniversary on Sunday. It technically was two years since the tumor was diagnosed on Sunday the 16th anyways. We asked Sean what he wanted to do to celebrate and he said bowling, miniature golfing, the movies, the pool and hometown buffet. So after Church we were off to Hometown Buffet. Then Rich took the kids bowling. Unfortunately my neck, shoulder and back were killing me from a car accident I was in a few days before so I went to Urgent Care instead. Afterwards he took them miniature golfing, then we met up for a trip to the pool. We never managed to fit in the movies but there wasn't a whole lot to see anyways. It seems kind of crazy to celebrate such a crappy time in our lives, but we were actually celebrating Sean being here with us two years later and doing so well. This time two years ago we had no idea what the future held and all we could do was pray and leave it in God's hands. God is so good! We are blessed to be where we are and wanted to celebrate and be thankful. Sean continues to do good in school and is looking forward to Summer vacation in a few weeks. He is also looking forward to State testing being over this week. It stresses him out, but he's getting through it fine. He had an appointment at UCLA last week for growth hormone testing. I was not told he couldn't eat after midnight so we went in after he ate a bowl of cereal and the nurses said we would most likely have to reschedule. The next appointment was in August. I made this appointment back in February so I was NOT happy. They checked with the Doctor and he said it might alter the tests a little, but that could be taken into account when the test was read. Bottom line was that he could stay and have the test done. I still think someone should have followed up with me as far as instructions, but it's too late now. They gave him a pill to lower his blood pressure (I was not warned of this either) which made him very groggy and he was told not to get up quickly or he would faint. The nurses checked his blood pressure frequently to make sure it didn't get too low. Then they gave him some growth hormones naturally occurring in the body and drew blood every half hour for about 4 hours. If I understand this correctly, the hormones they gave him should stimulate his own body's production of that hormone. Now the blood tests will be able to tell if and how much growth hormone his body is producing. I'm sure I will become an expert before this is over, but for now please bear with me. We should get results in a couple of weeks. I'll post them as soon as I know anything. Also, I need to schedule another MRI for June so I should have that info soon. It will be his first MRI without Blanche and a port-a-cath. I think he'll do fine. He did great last week with an IV, we just put elamax on his hand over a vein and it was a piece of cake. It also helped that Kim did it (one of his favorite UCLA nurses). That's about it for now, thanks for all your continued prayers. God is so good! Love, Kelly

April 29, 2004
Hello everyone! Are you surprised to hear from us so soon after our last update? We wanted to let you all know that the procedure to remove the Port-a-cath went very smoothly and Sean was a trooper through the whole ordeal. He held up great all morning until the Doctors came to take him to the Operating Room. He cracked a little and we all got a little teary eyed for a minute, but he calmed down once he found out Kelly could go into the room with him and stay until he fell asleep. Once he was asleep, Kelly came out to the waiting room with me and we waited for about 40 minutes before the doctor came out and told us every thing went well. A few minutes later we were allowed into the recovery room with him. They would only let one of us in at a time, so Kelly waited with him. Eventually they moved him to another room where we could both be with him and we sat for a couple of hours before they let us leave. He was happy to be done and very hungry. we grabbed McDonald's on the way home and hung out for the rest of the day. That's about all for that day. Sean had T-Ball practice and open house for his school tonight, so we have been a little busy today. Other than that, we are doing pretty good. We are starting to have some problems with Chris and school, I think it may be some residual effects from this whole ordeal with Sean. We pretty much left Chris to his own devices as far as school work was concerned and I think that it is finally catching up to him. We are working on it, but I think there is summer school in Chris' future. I have some pictures from the hospital if you are interested. I must apologize very deeply for not getting the Disney World pictures up yet. The truth is we don't have the web space to store the pictures. I found a place that gives us plenty of space for cheap, but I am having some difficulties with the way the images are stored. I will work on this soon I promise. In the mean time, we still have enough room on Comcast for the hospital pictures, so go to the Photo page and check them out. That is mall for tonight. Thank you for sticking with us through all of this. We are so grateful for your Prayers and thoughts. We'll post again when anything new happens. Thanks....love Rich.

March 4, 2004
It's been SO long since our last update. If you are still checking and haven't given up on us, Thanks! Have you ever been so behind on something that you just don't know where to begin? That's kind of where I'm at with everything right now, but I'm at least going to try and get the website caught up. We got Sean's results from the Endocrinologist and they are abnormal. What does this mean? It means he has to have more testing. He needs something called a stimulation test. He will have to go in, have an IV started, then they will administer something to stimulate his growth hormones. Then he will have blood drawn every half hour for about 5 hours. This will tell us whether his pituitary gland is producing growth hormone or not. They will also be looking at his cortisol levels, which I believe is produced by his adrenal gland. Don't quote me on that one though. Cortisol is what the body produces to manage stress. It can be very dangerous if the body doesn't produce it, and I know of some kids who need to have a cortisol shot on hand in case of emergency. Such as if they were in a car accident, the cortisol would have to be administered to keep them from going into shock. I know this isn't the best explanation, but as I learn more I will be able to explain it better. So we scheduled the test, but the soonest appointment they gave Sean is May 19th. The Endocinologist says not to be concerned though, he feels that it is acceptable to wait. I really like him a lot. He is a fellow at UCLA and has been great about calling me, and taking my calls and explaining everything to me. The attending physician is very nice too, so we can't complain. Enough with Endo stuff, it's been three months since Sean's last MRI, so you know what that means. Yep, it's Monday March 8th at 1:00 so please please please, pray for him. His port is still in, (another thing on my to-do list) so Blanche will come with us to administer the dye. It's so tempting to leave the darn thing in forever, but everytime he gets a fever UCLA sends us for a culture to rule out a port infection. It just complicates things, so it will hopefully come out later this month. After everything Sean has been through you would think something as simple as a port removal wouldn't be a big deal, but it still freaks me out. Sean will see Dr. Feig in the Santa Clarita clinic on Wednesday the 10th and Dr. Feig will take Seans MRI scans back down to UCLA with him to be read by their radiologist. This will save me the drive down, which is nice. Then on Thursday Sean is having his teeth cleaned and a few cavities filled. He is quite upset because when he goes to the dentist he has to take a high dose of antibiotics one hour beforehand (because of the port again). The antibiotic capsules remind him of chemo pills and he actually starts to get nauseated looking at them. He pretty much vomits any liquid medicine the second he tries to take it, so we are stuck with pills. I'm hoping this gets better with time, but in the meantime it's a part of life. The dentist was nice enough to schedule the cleaning and the fillings on the same day so he only has to take the pills once. Then on Friday it's his Birthday! I can't believe he is going to be 8 already. He is growing up so fast. It's strange to see other kids in his class bigger than him, I'm used to my kids being the tallest in their class. He will catch up though, once he is able to start the growth hormone. He is at 61 pounds, still one pound short of the 62 pounds he weighed the day he was diagnosed, May 16th 2002. And he is still the same height. He has grown less than one centimeter since he started treatment. But you know what, it doesn't really matter. We have him with us, he's doing great, he's been healthy, happy and loving life. He's having a bowling party this weekend that Make A Wish is throwing for him. It's basically a late "welcome home" party and a chance for him to show off his pictures, talk about his trip and have some fun. He's looking forward to it. He loves to ride his scooter, play with friends, all the things he should be doing so we are so blessed. He got hit in the head at school today with a ball while playing dodgeball and has a little mark on his forehead, but he's doing fine. My heart always stops for a second when I get a message from the school, but they always take such good care of him. Everyone from his teacher, to the yard duty supervisors, to the nurse, to the office staff, we have been really blessed. He has earned a few "caught being good" tickets too, so he's very proud of that. On a different note, this one being about me, I got my waitlist position for the RN program today. I'm number 332. So it's quite a wait but at least I've got a place in line. I start to feel guilty at times though, because Sean has said that he misses me and wishes I didn't have to go to school sometimes. It's not like I'm gone that much, but I think that time I spend studying, or even stressing because I should be studying and I'm not, affects them, so it's hard not to feel guilty. Oh yeah, I almost forgot, back to my to-do list: Is anyone reading this familiar with my rights regarding HMO's and medical bills? UCLA is billing me over 500 bucks from 2002 and 2003 when we still had an HMO. They are saying that the medical group is denying payment because there was no authorization. I don't really think it's my problem that UCLA didn't get authorization. They treated him, he needed the treatments, and I'm not paying it. It would just be helpful if I knew my rights on the matter so when I talk to someone I know what I'm talking about. So if anyone has any input, please email me. That's about it, thanks for putting up with no update for so long, and then finally getting a novel instead of an update, but you know we love you for it. And please please please pray about Sean's MRI and I'll post next week when we get the results. Love, Kelly

Well, I really have to say I'm sorry to everyone. We were really hoping to have all of the Disney pictures out by now. Unfortunately, we ran into a couple of small problems which have combined to prevent us from getting them posted yet. First thing is, we have just about run out of web server space. With the amount of pictures we have, we will definately run out, and we have already paired down the selection, so we really want to get all of these pictures posted. We have secured an additional 100MB of web server space through Melaleuca for a very low monthly fee. I will be working on loading the pictures onto this server over the next couple days. The next problem is time. Kelly has started back to school, and I have decided to join her. I am taking a Javascript class in order to have the skills to spruce up the site a little and make it a little more dynamic. Unfortunately it has taken a lot of our time and that means less time for working on the page. Finally, we have all been a little sick lately. Sean has had a fever for the last day or two, and Kelly and I have been fighting a cold for a week and a half now. So even when we have time to get on the site, we are pretty beat and just end up taking a nap. So....whaaaaaa, there's my sob story. The good news is that just about all of the pictures have been re-sized for placement on the server (this is the most tedious part) so once I upload them, it should be pretty quick to get the pages up. In the mean time, Sean is feeling ok despite having a cold and small fever for the last few days. We went to clinic at UCLA on Thursday and everything went pretty good. We are looking at another MRI in March some time. Kelly also took Sean to see the Endocrinologists (not sure on spelling) at UCLA last Monday. They were very nice and gave us a lot of info. They ordered some blood work to be drawn for Sean and will be checking Sean's blood for a number of things including growth hormone. As of right now, the general opinion is that Sean will need growth hormone injections for the rest of his life as a result of the radiations effects on his petuitary gland. We are holding out hope that the labs will show he is producing his own hormone, but if that is not the case, then we will do what is necessary. Sean will hate the shots, I gaurantee that, but we have met other kids who have to do this, and they do eventually tolerate it, even if not well. So that's about all for now. Sean is doing well in school and for some reason really enjoys math. We have a VIP day coming up for Sean's school this week, so Grandma Susie and Grandpa Don are going to come up for the morning. Chris and Brianna are doing well also. Please check back this weekend for the Disney Pictures. Thanks for your patience....love Rich.

January 28, 2004
Hi everyone. I can't beleive we have been back for over a week now. I'm sorry we haven't updated sooner but once we got off the plane it was back to reality and it's been crazy ever since. We came home to one car still in the body shop after we were told it would be finished when we came home. The power steering on our other car went out the day we left for our trip and thanks to a good friend it was being fixed. Then there was the leaky water heater that blew out over the weekend and trying to get it replaced. The kids learned how to heat water on the stove for a sponge bath. They also enjoyed eating fast food for a couple days and not having to do dishes. In the end though, we had a great trip and all the stuff we came home to didn't really matter because we were glad to be home together. It was just what we needed, to get away and relax and be together without any worries. I don't even know where to start with the trip. Disney Cruise Lines treated Sean very well. He had a sailor Mickey in his cabin when he boarded the ship. Then they gave him free snorkel and raft rentals on Castaway Cay. They also invited him to meet Mickey and gave us the picures for free. They also sent a little treat to our cabin every night, and on the last night they gave us front row seats and a VIP entrance to the nightly show. Sean learned to play ping pong on the ship and he also found the arcade although we tried to limit the video games. He loved the pool and even the Mickey slide. The kids loved going to Pinnochio's pizzeria anytime they felt like it for free pizza. The time flew by and it was over all too fast. Disney World wasn't near as relaxing as the cruise but it was still a blast. All the trouble we went to to stay at a Disney resort was worth it. The pool was the most amazing thing we have ever seen. We were a boat ride away from Epcot and the Boardwalk. The Boardwalk was really cool. We had hot dogs, played games, won lots of prizes, rented a 5 seater bike, you name it. We went to Epcot the day we got off the ship and went on Mission Space. It actually simulates you launching into space. The kids loved it but unfortunately I had to lay down on a bench for 45 minutes afterwards. And I was still sick. The Animal Kingdom the next day was much better. We saw all sorts of animals and even went on a water rafting ride. I got smart this time and bought a poncho so I didn't get soaked. The safari was pretty cool too. At Disney World's Magic Kingdom we went on some of the kid's favorite rides, but it was SO crowded we cut it short. It was 10 times worse than I have ever seen Disneyland. At Disney's MGM Studios Sean talked us into going on the Tower of Terror. He loved it so much we went on it again. He also liked to Rockin Roller Coaster with Aerosmith. We actually left Disney for a day and went to Unviveral Studios too. The food there was actually reasonable compared to Disney World. The kids favorites there were Shrek 4D, the Jimmy Neutron ride, Men in Black, Twister, Terminator and Jaws. They didn't know what Jaws was so now we have to rent it. Afterwards we had dinner with Rich's cousin Jeff who lives in Florida and he gave us a ride back to our hotel and loaned us an extra suitcase to get all the extra stuff we bought home. It's funny how we came home with more than we left with. By the last day our feet were killing us, and it was tough to pack up and leave but we have tons of pictures and a lifetime of memories. Rich promises to get the pictures posted this weekend. Thanks for your patience and for checking in. Love, Kelly

OK...this is gonna be quick, I promise..;-)..We are packed and ready to go. The Make A Wish Limo will be picking us up at 9:55 tomorrow morning, so it's time to get some shut eye. We had a scary moment earlier today when I called Disney to confirm our rooms for after the cruise. The rep. told me she showed us arriving at Disney World on the 20th and departing on the 25th. Of course this is completely wrong. We are arriving on the 15th and departing on the 20th. When I told the woman this she said the only room they could give us on the 15th was a concierge room for quite a bit more money. When I explained what has happend to us this week she said she didn't have any indication that I didn't originally intend to arrive on the 20th so she couldn't help me. We took the concierge room and Kelly and I promised each other that if we couldn't find a cheaper room then we would cancel and go somewhere off the Disney property, which would have broken the kids hearts as we had promised them a stay in the park. The more we thought about this the more angry we both got. I called Disney back and the new rep was very helpful although he told me the reservation now showed us arriving on the 15th and departing on the 25th!!! After seeing all of the changes and problems we have had, the rep forwarded me to a customer service person who listened to my tale of woe and then "Magically" found us a room for what we were going to be paying before this last incident. You know it's really funny that I really don't know what it's like to have anything come easy anymore. It just wouldn't be us if there was no drama involved. Anyways, we are getting ready to go to sleep and wanted to let you all know that we are very excited to finally be going and we would like to thank you all for praying for us and sending your kind thoughts via e-mail. Thanks especially to Kelly's Mom, Joy, and Aunt Barbara who were very concerned and gave us great advice. We would like to say we will miss you all, but to be honest with you, I doubt if we will be thinking about anything besides having fun and being together as a happy, healthy family. I'm sure you can understand. I will be taking the laptop with me and will try to post some updates and pictures as we go. I figure we will have some time in the evenings to get this done, so check back frequently. That's all for now. We love you all. Thank you so much for all of your support over the last year and a half....See you soon..Rich

January 7th, 2004
We have good news, the boys are getting better and Brianna is still healthy. Rich and I are feeling a little off but haven't come down with anything major yet. With all the stuff we're taking I hope we can keep avoiding it. I don't know if it's the Tamiflu, Elderberry, or Oscillococcinum (another natural remedy we're trying) that's helping the boys get over this so quick, but they are getting over it. They went from not able to get out of bed on Monday, to feeling like watching a little TV on Tuesday, to getting an appetite and a little more energy today. Sean is playing UNO with Brianna as we speak. His blood culture came back negative, but we knew it would. THis means he did not have a port infection, duh! but it has to be ruled out. His labs came back yesterday and his white blood count is low, which makes his ANC low, but that is actually good news because it confirms that he has a virus. If he had a bacterial infection his white counts would be evelated, but with a viral infection they actually go down. His monocytes are high though, which is indicating that his body is fighting and his counts will start going back up soon. Make A Wish rescheduled our flights so we leave on Saturday the 10th which will still get us there in time for the cruise. The cruise leaves on the 11th and when it ends on the 15th, instead of flying home that day we will stay until the 20th. Since Make A Wish made both flight changes at once, they only had to pay a change fee once. It was $177.00 per person and they were nice enough to take care of it for us. The only bummer is we still can't find a Disney hotel for the same price we were originally paying. We promised the kids they could stay at Disney World and don't want to break that promise. I think the problem is that we will now be staying over a holiday weekend instead of midweek, like we originally planned which makes it more crowded and more expensive. We haven't given up on a cheaper room opening up though! We will be checking with them all the way up until check in day. We refuse to let anything else spoil this trip, especially worrying about money. It's our "once in a lifetime" and we have the rest of that lifetime to worry about the money. That's about it for now, I just wanted to let everyone know that the trip is still on, just in reverse order. Rich's wonderful boss is letting him take the additional day off that he needs so it's all coming together. Thank God it's still going to work out! We just need to stay healthy, but so far so good. There's a lot to be said for constant hand washing, quarantine, face masks, gloves, and of course several doctors visits and a small pharamacy of prescription drugs and homeopathic remedies. Thanks for checking back in with us. Rich found some pictures from Relay for Life and has posted them on the photos page. If you get a chance please check them out. That's it for now, thank you for your thoughts and prayers...Love Kelly

January 5th, 2004 8:00 pm
We still don't have new flight information to update, but Make A Wish is working on it. They are very kind and it looks like they will cover any costs for changing the flights. There doesn't seem to be much availability with the airline, but I'm sure something will work out. Disney was also kind enough to apply our deposit to a new reservation after the cruise. They didn't have to do this, especially since we canceled the room when we should have been checking in, so we are very happy about that. The only problem is they don't have any rooms that sleep 5 people in the same price range we were paying. The only room they had left for us was quite a bit more. We had considered staying outside of Disney, but then we would have to rent a car to drive to the parks, pay for parking, etc. We really didn't want to have to worry about any of that, just get on the monorail and go. My friend Debbie is going to check with a friend of hers in the travel business and see if she has any suggestions. We also plan on checking with Disney on a daily basis to see if anything else opens up. I'm sure it happens all the time, with people missing flights, getting the flu, etc. Our shuttle van service from the airport to the hotel was also very good to us, no cancellation fees and we just need to call and reschedule when we have our new flight information. We've had to put this in perspective: Sean had a clean MRI!!!! (UCLA read his scans last week) We are so thankful for that, and that is THE most important thing right now. This is just a vacation, it can be re-scheduled if need be. We have our kids here with us, clean scans, and we're together so that's all that matters. I also wanted to let everyone know that we took Sean to see Dr. Kim today. Dr. Kim is the one that originally diagnosed Sean and we really think he's a great Doctor. I didn't think we could get an appointment, but we did. He put Sean on Tamiflu in the hopes that it might help lessen the duration of the virus. It's most effective when given within the first 48 hours of first symptoms, and we came pretty close to 48 hours so we'll have to see if it works. Chris is on it too, just in case it helps. Dr. Kim also switched Sean from Zithromax to Augmentin because he feels Augmentin will give Sean more protection from a secondary bacterial infection. He wanted to see Seans labs from yesterday, but Unilab hasn't even started processing them yet. Lavette also has been unable to get a preliminary report on Sean's culture, so that's a little disappointing. Lavette also warned us to be extra cautious with Sean as his immune system is still not what it should be. The fact that he has had chemo is a concern and will be for quite some time. As for the rest of us, we feel OK but after reading an article on WebMD, we decided to head to the vitamin store and buy something called Sambucol Black Elderberry Extract. This article referenced a study in which 90% of flu patients had a complete cure within 2 to 3 days of taking this extract. They all started taking it at the first sign of symptoms, though. So like the Tamiflu, it may be too late but it's not going to hurt to try. Rich, Brianna and I are taking it also, in hopes of preventing the virus. We are also taking a ton of Vitamin C, ecinachea, zinc, you name it. We're also opening all the windows from time to time for as long as we can stand it (germs can't survive in cold temperatures), constantly washing our hands, and spraying our non-toxic disinfectant. Will this be enough, I don't know, but I have to know we tried. As long as the kids are healthy and able to have fun, it will be worth it. I'll let you all know about the flights, hopefully soon. Thanks for all the prayers, I know we will get there eventually. As a friend pointed out today, sometimes God's time line is different from our own. We don't understand it, and may not like it but we have to trust that God knows what's best. That's it for now, here's a link to this WebMD flu info I keep talking about. It has a lot of great information and since flu season is far from over, I recommend reading through it and learning how to protect yourself. Love, Kelly

January 5th, 2004
Well it's 5:30am and we have been up for about an hour and a half. Sean woke up at 4:00 coughing uncontrollably. His temp was 102.5 only two hours after taking Motrin. Rich decided to give him a second dose and while we were waiting to see if it worked we looked up the flu and it's symptoms on WebMD. We read that the incubation period is from two to five days before symptoms appear, and that you are contagious from the day before symptoms appear until you recover. It also stated that this is spread by coughing and sneezing, which Chris and Sean have been doing all over the house. So we figure chances are we're all infected. We have made the difficult decision of calling Make A Wish and asking them to try and move our flight out to later in the week, and returning a few days after the cruise so we can still take the kids to Disney World. As you can tell by our last update we have been going back and forth about going. We finally decided that we just can't afford to be so far from home. It makes no sense to pay to stay in our hotel room sick for a week. We called the Disney World Resort first, to see if our hotel reservation could even be switched, and they were very kind. We will not lose our deposit if we change dates. The airline is a different story, but Make A Wish is going to see what they can do. It's still early so we have only been able to get ahold of the page operators, but they are at least canceling the limo service to the airport. It has been a difficult decision, but we feel that this is the right one. Even though the Doctor at Urgent Care wasn't sure this was the flu, we now feel that it is because all the symptoms she described are now occuring. We feel that we went in so early that they weren't really that bad yet. The fact that Sean's fever is spiking and is not responding to the Motrin well concerns us. We also don't want to be too far from UCLA because this flu bug can cause respiratory problems and we don't feel comfortable being so far from our Medical Support Team. Not to mention flu makes it hard for the lungs to fight off other germs. I don't want to think about how many germs he would be exposed to sitting in an airplane for 5 hours. Even though there are Childrens Hospitals in Florida, that is not what we wanted to do during our stay. We plan to spend the next few days resting and taking vitamins and of course praying. We expect the kids to be a little disappointed, but in the end they will have more fun because we'll be all be healthy.... hopefully. In the meantime we have heard wonderful things about a local clinic called Valencia Pediatrics. We have never been, but will call when they open to see about a nasal swab to diagnose the flu, then hopefully we can get started on Tamiflu as it is still within 48 hours of symptoms. That's it for now, we'll update later. Thanks for all the thoughts and prayers, we will still have a wonderful trip, just a little later than we hoped. We are blessed that Rich works for a great company and has an awesome and understanding boss, so rearranging his vacation days shouldn't be a problem. We'll post an update later today and hopefully we'll have some new flight arrangements to celebrate. Love, Kelly and Rich

Hello everyone. We wanted to let you all know that we are getting ready to leave for Sean's "Make a Wish" trip to Florida tomorrow. We are going to spend a few days at Disney World and then it's off to the Bahamas on the "Disney Wonder" cruise ship. We are in a bit of a bind right now because Sean and Chris have both come done with what appears to be the Flu. Both have fevers, chills, and sore throats. We had to take them into the urgent care this morning in hopes of getting some anti viral medication, but the Doctor said she wasn't sure it was the Flu, so we got some anti-biotics instead. We were so close to getting out of here without a hitch, but hey, if we did anything the easy way it just wouldn't seem normal. We contacted Lavette from UCLA and let her know what was going on. She stressed that we would definately have to bring Sean to the Emergency Room before we left to get blood cultures from his port a cath. She emphasized that even though Chris and Sean had the same symptoms, Sean could still have a port infection which could turn into a real problem if not identified early. Lavette insisted that we take Sean to get a culture and due to prior bad experiances at the UCLA ER, we decided to head to Children's Hospital LA and get the culture thewre. As Sean and I got ready to leave, Kelly asked me to call our home nurse Blanche one more time (we had already called three times) to see if she could help us out. Well, I guess God was looking out, because Blanche answered the phone and said she would be right over, thus saving us from several hours in a waiting room with other sick people. I later found out that Blanche had just arrived home when the phone rang and hadn't even put her suitcase down before answering. She is truly an angel to us and we love her deeply....thank you again Blanche!!! OK, so even though the boys don't feel so well, we have decided not to put off the trip. We have too much invested in it to try and reschedule now. Both boys want to go, and we hope that by the time we get there tomorrow night they will both feel a little better. We will be taking lots of pictures and hopefully updating the website every couple of days from our hotel room, so be sure to check back around Wednesday or Thursday of this week for some photos. What else is there to say. Thank you so so so much to all of you who have prayed for Sean and thought about him through the darkest days. We truly wish we could take all of you with us and we will be thinking of you during our trip. That's it for tonight, look for more updates in the next few days.....Love Rich.

December 29, 2003
I am sorry for not updating sooner. Thanks to everyone who prayed for Tim. It turns out that his neurosurgeon feels that it was a normal MRI. Whatever the radiologist saw, is nothing to worry about. Thank God! His family is so relieved and thankful. I still have not received a call from UCLA regarding their reading on Seans MRI, but hopefully soon. I did get ahold of the endocrinology department and the earliest they can do Sean's evaluation is February 4th. I am a little upset because they have a fax request from the Hem/Onc Dept dated October 4th, requesting his eval to be done in January. They never contacted me and now all we can get is February. It's not that big of a deal, but it would have been nice to have some results to take in to his February appt with the oncology dept. Christmas was wonderful. We went to Church Christmas Eve, then off to Outback with Rich's parents and brother. Christmas morning Santa was good to the kids and then it was off to Grammy's. We had a nice day there with her and the rest of the family. Saturday we went to Vista, and Sunday we had Grandpa Bill's famous fish tacos. Now we are home and trying to get organized and ready for our Make A Wish trip. We are so excited, but I'm glad we have the week to prepare. The weather in Florida is a little chilly now, but the Bahamas are supposed to be warmer, so we have to pack a little bit of everything. We have been told by Make a Wish that everything is set, but we have yet to receive our confirmation packet in the mail. This makes me a little nervous, so I have to call them and try and track it down. I have to keep this short, there is so much to do, but thanks for checking in and I'll update again when we get UCLA's results on Sean's MRI. Also, Rich has some Christmas pics to post so those should be up soon. Love, Kelly

December 17, 2003
I don't have any results yet, but I wanted to let everyone know that Sean made it through the MRI like a champ. He got a little upset this morning before school because it was Domino's day which means they get Dominos pizza for lunch. Since I was picking him before lunch, he was not happy. When I picked him up though, he was in a very good mood which was a relief. Once we got there, he kept himself occupied with the nearby candy jar until it was his turn. Blanche showed up, accessed his port, drew labs and then the first portion of the MRI was only 12 minutes. Then she came in and administered the dye, flushed the port, took out the needle and left. The second portion of the MRI was only 5 minutes. It turns out that University Imaging has new machines that are MUCH quicker and I have been told that the scans are also much clearer. It went SO well. I couldn't beleive it when we walked out of there at 12:45 and we didn't go in until almost 12:15. I still have to go pick up a copy of the films and take them to UCLA to be read there, but I will do that tomorrow while he is at school. He actually wanted to go back to school afterwards instead of Toys R Us but after thinking about it for a few minutes he decided to stick with Toys R Us. He said that school is so fun he doesn't want to miss it. He picked an Air Hog as a "reward" for having the MRI. Hopefully we will get the preliminary results this week from the radiologist at University Imaging because it's torture to wait and UCLA usually makes us wait at least a week, sometimes two. I'm sure the holidays will make the wait a little longer as well. As long as the results are good though, I will wait as long as it takes. Thanks for all the prayers, I really felt God's peace and love with us today. As far as MRI's go, this one was by far one of the best experiences. I'll post again as soon as we get the results. Please continue to pray that Seans' MRI is clear! Thank you. Love, Kelly

I can't beleive it's almost Christmas again. I still haven't updated on Thanksgiving yet! We had a wonderful time at Grammy's house. She was so happy to see the kids. It was kind of sad watching her go back to the board and care afterwards, but she wasn't upset about it so it made it easier. Afterwards we went down to Vista for a couple days and then it was back home. I finally tracked down last months's labs and Sean's ANC is 6783. His platelets are up to 172. Slowly but surely he is getting back to the normal range. I am so happy about his ANC though because Chris has the flu that we have all been dreading. It is bad, and now I'm wishing I would have gotten a flu shot. I took him to urgent care and he has medication to keep him from vomiting, Tamiflu to help reduce complications of the flu, and an antibiotic to prevent a secondary infection. The only problem was that pharmacies were out of the Tamiflu because SO many doctors have been prescribing it. I finally found a rite-aid that had one left and they were nice enough to hold it for me until I got there. Now we are just trying not to catch it from him. So far so good though. Other than that, we have just been busy trying to get ready for Christmas and Sean's Make a Wish trip in January. We had a great time at UCLA's Christmas party last week, and then Friday night we went to to the El Capitan theatre in Hollwood to see Haunted Mansion. The kids had fun, but they really enjoyed the "happy" man dressed like a clown on Hollywood Blvd that made balloon hats for everyone. It was nice to see them laugh, even if it was at me and Rich with our silly hats. Then last Saturday night I had a craving for Mexican food so we went to a little place by our house called Dario's. They have live music and the man playing saw Sean and asked him to come play the tamberine. (is that how it's spelled?) He sang a song from The Beach Boys that Sean has probably never heard before, but he did a great job with the tamberine anyways. He had fun and afterwards everyone clapped and cheered for him, which made him feel good. Sunday night was the Sunday School Christmas program, so it was a pretty busy weekend. Make a Wish called and wanted to start setting up Sean's wish for a Disney Cruise. I was under the impression that they started after Sean made his wish "officially" in August, but I guess they don't do it that far in advance. Unfortunately, we can't go on the seven day cruise to the Carribean, they only send kids on the 4 night cruise to the Bahamas. Then they told me that because it was only a month away, the only cabins left were inside cabins. I explained that we didn't want to seem ungrateful, but this was a once in a lifetime opportunity for Sean and part of the experience for him would be looking out the window, seeing the ocean etc. She was able to book us in a cabin with a window, but only on January 11th. School starts up again on the 12th, so the kids will have to miss a week. I'm sure they'll be in tears, yeah right! We requested that they book our flight to Florida on January 5th, so we can spend the week before going to Walt Disney World. We are responsible for that portion of the trip, but we figured this is probably the only time we'll ever go to Florida so we may as well make the most of it. We are all starting to get excited about it now that it's so close. There was a little bit of bad news this week though, but not about Sean. My Grammy had two seizures and had to be taken to the hospital. They say it's not uncommon after having a stroke, but she may not be able to go right back to the board and care. She may have to go back to a skilled nursing facility for physical therapy because she isn't walking as well as she was before the seizures. It's kind of a bummer because I want to see her make progress, not feel like she's moving backwards. Plus, she can't communicate very well and I don't want her to be in a strange place and unable to express her needs. We were also looking forward to bringing her back to her house for Christmas with the whole family and I hope that we are still able to. I am praying it all works out. Speaking of praying, Sean's MRI is next week, on the 17th. Dr. Feig said to do it in January, but we were uncomfortable waiting, since January would be four months since the last one, and the norm for the first year after treatment is three months. I know that one month doesn't seem like a very big deal but it is to us. We're praying for good results and that would be the best Christmas present ever. The only bummer is that Rich has to go out of town for training and can't be there. It doesn't sound like that big of a deal, but it is such a comfort to Sean to have both of us there. Not to mention Rich probably won't be able to think about anything other than Sean, which is kind of hard during a training class. At least Blanche can come with us. She is good at keeping Sean (and me) calm. Plus it takes away his anxiety about getting a shot because he is comfortable with her accessing his port. Speaking of his port, we are going to have to think about having it removed sometime early next year. Sean doesn't even want to discuss it, but at some point it is going to have to come out. We'll cross that bridge when we get to it. One drawback of having the port during flu season is that if Sean gets a fever, even if it is the flu, he'll still have to have blood cultures to rule out a port infection. So we're all trying to stay healthy, take our vitamins, hand wash, etc. It's all second nature after a year on chemo, it never really leaves you. Please continue to pray for Sean and that he has a clear MRI next week. I will update as soon as I get word, which I'm hoping will be by the end of next week at the latest. Next week will be pretty crazy with Rich gone. Monday night my sister graduates from Nursing School! Then Tuesday night I have finals and Wednesday is the MRI. And in between everything I still have Christmas shopping to do. Writing all this just made me stop and realize that instead of stressing about everything, I need to stop and be glad that I'm able to spend this Christmas with my family and that we are all going to be together. There are way too many parents I've come across this year whose children are spending Christmas as angels. I am so thankful for each and every day that we are together and that Sean is doing so good. Thanks for listening and for your continued prayers. We are so blessed. Love, Kelly

November 22 2003
Greetings all, we thought it was about time for another update. We are happy to say that things are so very close to what used to be normal, that we really don't have all that much to update you on. Of course, things will never actually be what they were before the cancer, but we are pretty happy with what we've got!! Sean is looking and feeling well. At this moment, we are sitting down to watch Indiana Jones and the Lost Ark. How finny that I enjoyed this movie so much as a kid, and now I get to share it with my children. How cool is that??? So I know you're asking "what's new?", well, not much at the moment. Sean has been going to school and is doing pretty good all things considered. Kelly sat down with Sean's teacher a few days ago, and she said he is having some minor problems with reading comprehension and writing. She went on to say that he is a great reader, but sometimes he tries to read so fast, that he doesn't remember what he was reading. With the writing, he isn't spacing his words and sometimes his sentences look like one long word. Mrs. Seemann said we shouldn't worry about either of these things too much, since Sean had missed most of first grade and it will take some time to catch up. Besides, he isn't really that behind, as there are some other kids in his class who are struggling as well. We aren't really worried about it right now, but it does mean we will have to keep an eye on this as we move forward with his education. We are getting ready to head south for Thanksgiving. We will be visiting with Kelly's Grandmother, Grammy, and the rest of Kelly's family at Grammy's house. Grammy doesn't get to see the whole family together much since the stroke, so this should be a nice day for all of us. We are also trying to finalize the details for Sean's "Make a Wish Trip" in January. It's getting closer folks. We are really looking forward to a long vacation together. A Disney cruise and a few days at Disney World will be just the ticket. So, I think this pretty much catches us up for now. Happy Thanksgiving everyone. Thanks again for checking in. We'll update again as we move towards the new year. Thanks for checking in again. We love you all....Rich.

Hello everyone, long time no update. Well, we made it through Halloween in one piece. It was raining here so we weren't out there for very long. Sean was a soldier or "army man" as he called it. What a difference a year and no chemo make. Last year he was so unsteady and weak I had to carry him almost the whole time. In contrast, last night I could barely keep up with him. He ran into a buddy, Andrew, and they took off together. It was all I could do just to keep up. We got new labs this week and Sean's counts are still going up. His ANC is around 1980 and his platelets are at 144. That's just 6 shy of the low end of normal yeehaaawww!!! He is feeling great and going strong. Everything else seems to be going well right now. We don't have any other DR’s appointments scheduled until February. We do have an MRI scheduled for January but that's it. I guess you could say we are getting back to normal. Sean is doing really well in school and has made a few new friends. Sean asked that a councilor come to his school to help the kids understand a little more about what he has been through. I guess he's been getting a lot of questions and he wanted someone to explain a little to his classmates. Anyway, it went really well. It kind of went over the heads of some of them, but many of the kids asked Sean questions and he seemed happy to answer them. We met up with the Centurion Club last weekend. For those that don't know about them, they are a small but growing group of people interested in making a difference in their communities. The club was formed by Armando Macias. Armando is a Deputy Sheriff who heard about Sean when some of my old work buddies sent out word of Sean's diagnosis. Armando contacted me and asked if we would let the Centurion Club "adopt" Sean as their focus child for 2003. The club has put together several fundraisers and has donated the money to Sean's Sheriff's Relief Fund. We wanted all of you to know how great the club members have been. Thank you to Armando and Rachelle and all of the Centurion Club members for your wonderful efforts on Sean's behalf. We also had the opportunity to visit Lombardi Ranch pumpkin patch last Saturday. The Michael Hoefflin Foundation for Children's Cancer once again sponsored the event and Sean, Brianna, Kelly, and I were able to attend. Chris was camping with Kelly's parents. We had a good time but left a little early because Sean began to feel a little ill. We had a good time and Sean felt better after a little rest. If you have the time you should take a look at the Lombardi Ranch (again) pictures as well as the Centurion Club pictures. Just visit Sean's photo page to take a peek. That's all I have for right now. Thanks for checking back again. We will try to update a little more often. Also, we have been experiencing some minor problems with Comcast's hosting of Sean's page. Hopefully you haven't noticed too many problems. Please be patient and check back once and a while. Hopefully Comcast will get their act together before I am forced to seek another host site. So, that's all for now. Thanks again for checking in. We love you all.... Rich

October 14, 2003
Hi everyone! It's been a while but thankfully there hasn't been a whole to update. I promised the results from Seans neuro-psych testing and he has actually improved in everything except hand-eye coordination. He was a little worse than last time, but the Doctor feels that with practice Sean can get it back. It's a combination of where the tumor was located, (the cerebellum controls balance and coordination) plus his surgery, and it can also be a side effect of radiation. If there's one thing Sean won't do it's give up, so I expect that when he goes back in 6 months he will have improved. He is full of energy and enjoying life. He's doing good in school, loves his teacher and is making friends. He loves Jesus and looks forward to Sunday School. Life is good. since his chemo ended I have really been making an effort to only buy healthy foods and get the kids to take vitamins and Sean still has to take magnesium. I got sick of arguing about it so I finally told him he could earn two bucks a week for taking his vitamins and magnesium every day without arguing and complaining. Guess what? It worked. Now I'm wondering when he'll realize that two bucks won't go very far and he wants me to up it. He is starting to help around the house more and will be earning a small allowance on top of it, so it should be OK for a while. I just got word from Seans teacher today that UCLA's school specialist will be coming next week to talk to Seans class. He is looking forward to that. We have been invited to go to Lombardi Ranch with the Michael Hoefflin Foundation again this year, so the kids are excited about that. They get to decorate pumpkins, eat junk, all that good stuff. Last year Sean's counts were too low, and we weren't supposed to take him out of the house, but we went anyways (with a mask and hand sanitizer) and it was so much fun. I'm sure this year will be even better. Sean wants to take karate lessons and I've heard from other parents whose kids have gone through cancer treatment that it was the best thing for their self confidence, balance, and coordination. I'm kind of waiting for Chris' football season to end first because there just aren't enough nights in a week for all our activities. In the meantime I can start looking for the right place to take him. I cut back my school to two nights a week, four was too much. There's a two year waiting list for the nursing program anyways, so I will have plenty of time to get all my classes done before then. Thanks for checking on Sean and for the continued prayers. We are so blessed. Love, Kelly

October 2, 2003
Sean had his first appointment at UCLA's neuro-oncology follow up or "survivor" clinic. He was releived that this was only a check up, no chemo, or blood draws. First Dr. Feig and I discussed a small cyst on the pineal gland that showed up during his MRI. He said that it was nothing to worry about. Then Dr. Lazareff came in (he's Sean's neurosurgeon) and he explained to me that it really is nothing to worry about, sometime they show up, sometimes they don't, on a lot of people. He said it's insignificant and it's not related to anything he's been through. That made me feel much better, I had been kind of stressed about it the last couple of days. The only reason I knew about it is because I requested a copy of his MRI report faxed to me, and then I read it for myself. I have been told that Sean doesn't need to come back to clinic until February. Yes, February. I just about fell out of my chair. It is so strange going from regular visits to such a long gap. I guess this is part of getting back to normal. Dr. Feig also said that MRI's can be done every six months, but it was obvious I was a little unhappy about that so he said we can schedule it for January, so we'll have the results in time for our February visit. I asked if we would do brain and spine each time now, and Dr. Lazareff explained to me that it isn't necessary to scan the spine any more. The time he was at risk for it spreading was while he had the tumor or during resection. Basically his tumor was in the cerebellum pressing on the fourth ventricle. The fourth ventricle sits between the brainstem and the cerebellum. CSF or cerebrospinal fluid flows from the ventricles above through the fourth ventricle and down into the spinal cord. So if the tumor cells would have spread, they most likely would have spread through the CSF at that time. He said that since all his spinal MRI's have been clear so far, and we're more than a year out from surgery, we don't need to worry about metastasis to the spine (referred to as "drop mets"). I know it's little technical but basically, it's good news. Not a guarantee, no Doctor will give one, but it's as close as you can get. There is no hurry to remove his port-a-cath, which is fine with Sean, because he doesn't like the thought of getting a needle in the arm for labs, or for the dye to be administered at his MRI's. It will need to be flushed once a month, but he's used to that and with the Emla, he doesn't feel anything. So we will discuss it again if February, but for now it stays. He will also need an endocrinology exam. He has grown less than 2 cm since diagnosis. It could be that his nutrition wasn't good during chemo (gee, I wonder why?) or it's entirely possible that his ability to make growth hormones was damaged by radiation, which is the most likely cause. I heard there is a long wait to get an appointment in that department, but I am assured that there is no hurry. I brought up what Dr. Siegal said about it needing to be done before his bones fused, but Dr. Feig assured me that boys' bones don't fuse until puberty. So we have time, but it doesn't hurt to get him evaluated. He also feels that Seans bone marrow is producing, it takes time to get his counts back up and a little fluctuation is OK. His anc dropped down to 1600, but his platelets went up. He wasn't concerned, and said we don't need labs twice a month anymore. I guess we're back to once month, but that's a good opportunity to get his port flushed. Sean talked with UCLA's school specialist and he expressed the need for her to talk to his class about his experiences. I kind of thought maybe it wasn't necessary since his hair has grown back and most kids in his class don't really know that anything was ever wrong. She told me that since he's mentioned it, we need to address it. She will contact his teacher and try to set up a good day and time. That's about it, it was a pretty good visit, as far as Doctors visits go. We got to see Bette, she's a pediatric nurse specialist, and she has been there since he was diagnosed. She gave me a book on childhood brain tumors when Sean was in the PICU after his surgery, she put me in touch with another awesome lady named Gigi, from We Can, whose son had the same tumor as Sean and is now doing good. She helped expedite some tests Sean needed before he could be released from the hospital last May. It was after his surgery and he was stable enough to home, but the Hem/Onc department wanted some tests done before he was released. The only problem was getting the tests scheduled before the weekend, so we didn't have to stay until Monday. Bette made it happen so we could go home, and I have always been grateful. He also got to see one of his favorite chemo nurses, Kim. She almost didn't recognize him with all his hair. She was one of the first ones to access his port, but she was so good with him, and he has requested her in clinic ever since. That's about it, I know I'm kind of going on and on. Rich and I meet with Dr. Kaleita tomorrow afternoon to go over the results of his neuro-psychological testing. I'll update on that later. Thanks for all the prayers. Love, Kelly


Sean, Chris, and Brianna stop for a picture before our wonderful day at Disney's Castaway Cay Island.	If you look real close...you can just see Sean's feet in the splash he made at the bottom of the Mickey slide.