Updates

Can you say 6, thats right kids, only six more treatments...yeah!! Not much to tell you about todays treatment. Sean and I arrived early and played some Sega. The treatment was quick and we were gone after the usual 20 minutes. Sean is so good at lining himself up on the table now, the RT team hardly needs to adjust him. He has a cute little square on his forehead from the pad he lies on. The mark is almost permanent now. Hopefully it will go away after we're done. Anyways, we left the treatment center in good spirits although Sean did feel a little nausea. We decided to see how he would do without his medication today. All in all I'd say he did well. A little sick, but no throwing up!! Sean went to school for about two hours and although he was reluctant at first, he soon joined the class and according to his teacher, he had a good time. Thats all for now. We'll be back tommorrow , same Sean time...same Sean channel....Thx Rich

July 30 2002
Well, another Chemo day down. From what we understand we only have three more Chemo sessions before we get a 6 week break. We are really looking forward to that. We are down to only 7 radiation treatments left and Sean seems to be hitting his stride. We were in and out of Radiation today after about 20 minutes. We saw Dr's. Selch and Ahn in the radiation clinic for about 30 minutes then headed upstairs to Hemotology. We saw Dr. Moore and Lavette at the Chemotherapy clinic today. We really like both of them. We were in the Chemo clinic for about two and a half hours before Sean got his shot. We're not complaining though, we were just happy to get out of there again. Sean is eating well although he lost two pounds since last week. I guess it's because he's been more active and is burning the calories he eats. We'll keep trying to fatten him up, but for now just hearing him ask for food is a blessing. Sean, Kelly, and I had a little talk tonight about Sean's temper. Lately when he gets frustrated he gets angry and has been hitting us. This is not normal behavoir for him. We have been considering consoling but have been putting it off. We feel so rushed all the time as it is. Anyways, we all agreed to talk more and be angry less. We'll see how it works. That's it for now, thanks for checking in again.....Rich

July 29 2002
Only 8 days of radiation left! Sean is getting excited to have it over with. This morning just Sean and Daddy went to treatment and it went so quick they were home by 8:30. Then when our nurse Blanche came to take his labs she couldn't believe how much better he looked. He ate good today and kept it all down. We even went shopping for a beanie cap to cover his head. He of course picked the one with the skull on it. Not my first choice but that's OK, he likes it. Today we found out that Sean will have another MRI on August 20th just to verify that the tumor is not growing back. They don't have any reason to think it is, it's just routine to check after the radiation is through. It's only half an hour and Sean wants to do it without anesthesia like he did for his first MRI. Tomorrow is chemo again, so we're going to try and get some sleep. Love, Kelly

July 26 2002
"It's Fri---day, It's Fri---day, It's Fri---day"......Sean sang as we cruised into the radiation chamber today. We arrived a little early to UCLA and Sean and I played Sega. The treatment was short and we were out of there quickly. On the way home, Sean and I talked about what he wanted to do to celebrate another week down. He said he wanted to go to Chuck E. Cheeses for some fun. We arrived home without incident and at about 9:15am Sean an I headed to Mr. Cheeses place for some good times...Boys only style!! We had a good time and despite my best efforts, Sean beat me two outta three at air hockey. We played games for about an hour and a half. Sean earned 424 tickets from the machines which he used to buy candy and "sticky hands" for his brother and sister. Oh yeah, He ate a piece of pizza!!, Thats right! a whole piece...Thats my boy! After the Cheesters place, we went to Toys-R-Us and Sean bought a Gameboy game with some gift money from my instructor at school. We went home and took a short break before sending Sean off to school for an hour or so. When he got home from school he was pretty tired. We had a reporter from the ALADS Dispatcher come by the house today. The Dispatcher is a Union Newsletter from my work. They heard about Sean and wanted to write a story about it. I will try to get extra copies if anyone wants one. Thats it for now. We anticipate an early bedtime tonight and hopefully some sleeping in tommorrow. Until next time, thanks for checking in.....Love Rich

July 25 2002
Well, the end of the week approaches. Sean seems to be doing well. We arrived at UCLA a little early. Lucky we did as someone had broken the Sega machine, and Sean was having none of that. A little tape and a couple of minutes time, and Kelly and Sean were blazing away at "Streets of Rage" until Sean's name was called for therapy. The treatment went well and we were outta there after about 15-20 minutes. On the way home, Sean wanted something to drink. We stopped for drinks and a snack. After we got home, Sean ate a couple of bites of Cereal before getting a tummy ache. He rested for awhile and felt good enough to go to school for an hour and a half. After school, Sean was invited to his buddy Conner's house to play. Sean had a good time, but came home wiped out. Sean put himself to bed shortly after bath time. All in all, it was a good day. We're looking forward to tomorrow, since it's Friday and the weeks over. Until then, thanks for checking in again....God bless you all...love Rich

Well Sean had a really good day today. His treatment went well, nothing unexpected. He then spent the morning playing video games (and eating) before going to school. His teacher and classmates were very happy to see him as he hasn't been in almost two weeks. He only stayed an hour though as his stomach hurt and he went to nurses office. This evening he felt well enough to go to SCORE, an educational center that offered Sean a scholarship after hearing about his illness. He really enjoys it and it should help keep him from falling behind in school, hopefully even getting ahead. Then it was off to Longs afterward for candy, he drives a hard bargain. Thanks for checking on Sean today and for all the prayers and support. Love, Kelly

Today was chemo day again after radiation. It actually went really well. The radiation went quick, and we were told Sean only has 12 more sessions left. Then we went upstairs for chemo. He weighed about 55.4 lbs. He started out at 62 lbs. He has been eating better so were going to see how it goes. He felt good afterward so we went to Denny's and he ate a chocolate shake, french fries and pancakes. Afterward we had our follow up with Dr. Kaleita. He is the psychiatrist testing Sean's cognitive skills. He gave us the results of the tests Sean took 2 weeks ago. The tests showed Sean was well above average for kids his age. The Dr. also said that Sean is symmetrical. He said that this type of tumor commonly effects the use of either the left or right side of the body, depending on where the tumor was located. Sean seems to have equal use of both sides of the body which is encouraging. After the meeting we went home and took a nap. Sean ate cookie crisp cereal for dinner and is managing to keep everything down. Love to you all, talk to you tomorrow, Rich and Kelly

July 22 2002
Monday came a little too quick. We had a nice weekend. Saturday night Sean took a picture with a group of kids from the Michael Hoefflin Foundation for Children's Cancer. They will be on the cover of the Santa Clarita Magazine in September. The magazine is featuring the Michael Hoefflin Foundation and their efforts to help cure childhood cancers. The foundation is having their annual "Evening Under th Stars" event in September, and the Santa Clarita Magazine is helping to promote the event. The magazine is well read in our area and it is a great way to make the public aware of the children who are fighting cancer right here in Santa Clarita. As far as getting a copy of the magazine, don't worry I'll call and see how to get extras. I'm sure we can also put it on the webpage once it comes out. Sunday Sean went swimming at his grandparents house and he seemed to feel good. This morning at radiation Seans head seemed to be a little swollen as it was very sensitive and they had trouble putting the mask over his head because it hurt. They paged the Dr. to look at it but he thinks it's OK. After we got home Sean actually ate a bowl of fruit loops. He slept most of the afternoon and wasn't up to going to school but when he got up he had another bowl of fruit loops for dinner and a cherry home run pie before he went to bed, along with a glass of chocolate milk. That's more than he's eaten all week and he kept it down. Thank God, maybe he'll start to put some of his weight back on. Anyways were going to bed soon as tomorrow is our long day, radiation, chemo and the psychiatrist is going to go over the results of Seans testing with us. Talk to you tomorrow night, Love Rich & Kelly

July 19 2002
It's Friday. Sean wasn't excited about treatment today but he got through it. We were all a little surprised that he wasn't doing his "It's Friday, It's Friday" dance. He managed to eat a few bites of toast for breakfast and some gatorade throughout the day but that's about it. We went to a support group meeting/pool party sponsored by the Michael Hoefflin Foundation. We met another family whose son had a medulloblastoma tumor, the same as Sean's. He is undergoing the same treatment but he finished his radiation in January and is now doing the chemo cycles. It was nice to talk to someone who understands and it was also good for Sean to see another kid with the same scar and a portacath. He swam for a while but tired out quickly. Unfortunately he still does not want to eat. I was told by the family we met tonight that their son went through the same thing during radiation but his appetite came back after it was over, so that was encouraging. Thanks for checking on Sean again. Love, Kelly

July 18 2002
Today was a difficult day for Sean. As you know he hasn't been eating or drinking enough, and this morning he was very tired, didn't want to walk and said his stomach hurt. Rich took him to radiation anyways and carried him in. On the way out he ran into Dr. Ahn, the radiation oncologist and mentioned his symptoms. Dr. Ahn said that Sean was dehydrated and he needed to go upstairs to the pediatric urgent care for some IV fluid. It took quite a while but Sean felt much better afterward. He ate crackers and juice in the car on the way home and part of a jamba juice once he got home. The rest of the day was spent resting and trying to get him to do some of his homework, he is getting very frustrated with it. He informed me that he doesn't like to be bald. When I asked him why he said because it makes his head hurt. I told him that his head didn't hurt because he didn't have any hair. I wish I could tell him why it hurt, if it's the radiation, the surgery, dehydration... As a mom I want to fix it and sometimes I think he gets mad at me because I can't. At least tomorrow is Friday and he'll have a break. Thanks for keeping Sean in your prayers. Love, Kelly

Hello all. Today was the first day of Sean's boost treatments. Boosts are were they raise the strength of the radiation and focus it on the tumor bed area only. He is done with the spinal radiation and hopefully will get his appetite back. The boost went smoothly and we were in and out in about 15-20 minutes. I took Sean by East Facility after the treatment. The deputies at East have been raising money for Sean's Sheriff's Relief Fund and I wanted them to meet Sean and maybe see a little of what he's been through. For those that don't know, I worked at East for 7 years and it's been really nice to have their support, My thanks go out to all of them. Not to be left out, I'd also like to take a moment to thank everyone at Palmdale Sheriff's station and also Century Sheriff's station for all of your efforts to help rasie funds for Sean. We were called be Sue Hoefflin of the Michael Hoefflin Foundation who asked us to write a short (1 page) story of what has happened to Sean. The Foundation is making books to hand out at their next fund raiser (more info on that soon!!) and Sean will be in it. Sean was really wiped out after our visit to the Jail and fell asleep as soon as we got home. He hasn't eaten well again today. Hopefully tommorrow will be a better day for that. Thats it for now, thanks for checking in......Rich

Hi everyone, sorry we've missed a few days. We got through Friday and decided to rest a little. Next thing we knew the weekend was over. Friday's radiation went well, Sean did a great job of lying still. He practically bounced off the table when it was over. Sean was very excited about having the weekend off. Saturday we had some special visitors. Aunt Barbara and Uncle Tom Keck came up to see Sean. They had been meaning to come for awhile, but Tom broke some ribs and the trip was put off. Well, they finally made it. Sean was happy to see them. Aunt Barbara made Sean some cookies which he actually ate!!!! Unfortunately, getting them down isn't keeping them down and Sean threw up everything he ate... poor guy! Sunday we slept late and missed Church. We felt bad but realized we needed the rest. We just spent Sunday around the house trying to relax and keep cool. We did make it Men in Black II though Sunday evening. Monday we were back at therapy. The RT team needed to take "port films" which they use to determine the fields and angles for the next phase of treament. This process adds about 20 minutes to the entire procedure, but Sean made it through just fine. We got home, and Sean tried to eat some cereal. He couldn't keep it down. So far, he's lost about 5 lbs. We are trying to find foods he likes that he can keep down. Tuesday went well again. The RT team needed new port films. Based on the films from Monday, they had adjusted some of the treatment fields. Now they needed some port films to double check the new fields. Again Sean was on the table for about35-40 minutes. We had radiation clinic after treatment and Dr. Ahn informed us that we were through with the spinal treatments and that we would only be treating the "tumor bed" from now on. He said Sean's appetite should start to come back soon and he wouldn't feel so nauseaus. Hopefully thats true. We finished with radiology and headed upstairs to hemotology for chemotherapy. Lavette, Seans nurse practitioner was there to meet us. We talked with her and she was happy to hear about the spinal treatments ending. She wants Sean to gain back his weight. We met Dr. Fieg for the first time. He was very nice and made Sean laugh. The Dr. said Sean is doing very well, all things considered. Sean got his shot of Vincristine from nurse Kim. We left the hemo clinic at about 10:30 AM. To celebrate being done with the spinal treatments (and half way done with the radiation treatments) we took Sean to Red Robin for lunch. Well we almost made it to the entree before Sean got ill from eating a carrot and had to run for the nearest trash can. Needless to say, we asked for boxes and went home to eat. We took lots of pictures today. I'm planning on putting them together on the site today and or tommorrow. Check the Chemotherapy link especially, as we had very few pictures before today. Thats everything in a nut shell. We received a ton of e-mails over the weekend. Thanks to all of you who took the time to write to Sean. Also, thanks to John Christie, who stopped by the house today in his Sheriff's Dept. radio car to let us take a picture. See the Misc. link to view the picture. Thanks again for checking up on us...Rich

July 11 2002
Todays treatment went well. Sean didn't feel like going to school afterward though, because his stomach was upset. He slept from after 1:00 until almost 5:00. He actually had 2 visitors today, Deputies Roman Moreno and Patty Vargas from the Century Sheriff's Station. They brought Sean some goodies and are working on setting up a fund raiser. Too bad Sean slept through the visit, he would have loved to meet them and to see their police car. He's seen them before but I think he still would have enjoyed it. Hopefully he will be able to attend a BBQ they are having at their station in August. Deputy Moreno's daughter has been battling a Brain Stem Tumor since she was an infant. She is 4 now and having Roman visit really meant a lot to us. Perhaps the two kids can meet sometime?? The support from everyone has been overwhelming and we are so grateful. Sean actually ate dinner tonight. The rest of us had chili that a friend made for us but Sean wanted a lunchable. At least he ate. He also had 2 glasses of chocolate milk. Sean is very glad that tomorrow is Friday and he has the weekend off from treatments. Crocodile Hunter comes out tomorrow and Sean keeps reminding me he wants to see it, so maybe we'll go the movies. Thanks for all the messages to Sean, he loves to read them. Talk to you later, Love Kelly

July 10 2002
Today Seans Grandma Joy and his Grammy went to radiation with us. It was a treat for him to introduce them to his RT's. They informed us that Sean was their favorite patient. After we got home Sean went to school from about 11:00 to 2:10. He took a nap about 2:30 and slept until about 6:00. Then we went to the pool for a little bit. (It was just chlorinated yesterday, so it should be OK.) Sean really enjoys swimming now and I think it's good for his self confidence. He gets be a normal kid again for a while and when he gets tired he can just float and relax. We only stayed for 45 minutes though because I don't want him to overdo it. He gets tired out very easily. He didn't want to eat dinner, but I discovered he likes orange flavored Flinstones push ups. They are like orange sherbert and he had 3 of them over the course of the evening. Finally, something that tastes good to him. Talk to you all again soon, love Kelly

July 9 2002
Today was a long day. First radiation, then chemo. Sean only lost about 1/2 of a pound. His blood counts also went down a little but that is to be expected. They are still high enough for him to go to school as long as he is up to it. We are just being more careful with things like handwashing, etc. He will also start taking an antibiotic on weekends as a precautionary measure. I guess one of the side effects of the chemo is a type of pneumonia and they want to try and avoid it if possible. Then we saw the psychiatrist again to finish the testing he started last week. He will go over the results with us in two weeks but for now he did say that Sean is very smart for his age and he couldn't beleive his vocabulary. We tried to eat Burger King for lunch but the smell of it made Sean very sick and he could not eat it. We also realized today that Seans hair is finally falling out. He was leaning on me and then I noticed it all over my shirt. I offered to shave it again but he wants to leave it for now and let it come out on it's own. Tomorrow Grandma Joy and Grammy will be going with us to radiation. Thats about it for now, we are all very tired, except for Sean who took a 2 hour nap this evening and wants to play video games. I'll take that as a good sign though. Thanks for checking on Sean today, talk to you all again tomorrow. Love, Kelly

Today was the first day of school. Sean was late due to his daily radiation treatment and then a nurse came to the house to do his labs. Then we took him to school and he was just in time for recess. He did fine, we were basket cases. He had a good day, says he ate all his lunch. He is now very exhausted though. I know it was good for him emotionally to go but I hate to see him this tired and cranky. Will discuss this with the Dr. tomorrow. He and Daddy are now taking a nap, hopefully Sean will wake up hungry. He turned down a homemade strawberry shake made with whole milk. Thanks for checking on Sean today, keep praying and we'll talk to you again soon. Love, Kelly

July 3, 2002
Todays treatment went very quick. Just the boys went today, Rich, Sean and Chris. Mommy and Brianna stayed home and cleaned the house so we would have the afternoon free to go to the movies. We saw Lilo and Stitch, very cute. Before the movie, I went to Princess Cruises and turned in my letter of resignation and cleaned out my desk. Very sad to say goodbye to people but everyone was very understanding. Sean is thrilled though that his mommy will be here all the time for him and won't have to go back to work. With all the treatments coming in the next year it would have been impossible to work, especially when blood counts are low and he can't go to school or be around other people. Thats about it for today, we are expecting dinner delivered by some church members shortly, They have been awesome the way they have come through for us, especially since we always sat in the back and didnt really know very many people. Thanks for checking in with us today. If theres no update tomorrow its because we spent the day sleeping. We'll try and get up in time for the fireworks though, Happy Fourth of July! Be safe. Love, Kelly

July 2 2002

Today was a very long day. Auntie Kim came up last night so she could be with chris and Brianna today while we were gone. Sean had radiation first which he wasn't in the mood for but he was a sport anyways. Then we had to go to another room for a ct scan which lasted about 15 min. He had to lay in the same position for that as he does his radiation treatments. He got very upset because his nose started running down his face while he was laying there and couldn't do anything about it because the mask was over his head. They didnt want to stop the scan because it was almost over and they would have had to reposition him afterwad and start over. He was a trooper and finished up though. I told him to wipe his nose on daddys shirt but he didn't want to. Then we saw the radiation oncologist. That was pretty routine. Then we went upstairs to the second floor to the chemotherapy clinic. Sean lost 3 pounds. Its not a big deal at this time but we need to keep him from losing any more so he doesnt need intravenous feedings. So anything goes. Ice cream at midnight? Fine. McDonalds. OK. I also read in a book to use cream in cereal instead of milk,and add butter and cheese to anything you can. The oncologist agreed with this today when I asked him. We also learned that Seans blood counts dropped a little but that is to be expected. He can still start school next week for half days as long as hes up to it, which he seems to be. He says he wants to go. So then after waiting about 2 1/2 hours he finally got his chemo shot which lasted all of five minutes and did not hurt due to a great nurse and emla cream. We then headed off the meet with a psychiatrist to do some cognitive testing on Sean. Today he got to know Sean a little bit, checked his motor skills, which he says are really good. Next Tuesday we will meet him again after chemo and he will do some piture identification tests etc. to get a baseline of his abilty to think and respond. This is necessary because the radiation treatments often cause minor to severe learning disabilities. We finally headed home about 1:00 and Auntie Kim took us to McDonalds. Off to take a nap. Talk to you all again soon. Love, Kelly

July 1 2002,

Well we're back at "the office". It's like a job, everyday and don't be late. The treatment went really well. Sean is happy because his brother and sister (Chris and Brianna) came to the office with him. He made all the RT's laugh by running around like a mad-man after the treatment. I think he is still scared and feels so overjoyed to be done with each treatment that he just can't help but break lose a little. We decide Mcdonald's is a good treat for the family. We have to hurry though, Sean has an appointment with a home health care nurse, Blanche, at 9:30, at our house for blood draws. Better get the EMLA cream on now. Blanche is a darling and we immediately liked her. She was very kind and caring with Sean. I think we are going to like her a lot. Sean spent the rest of the day playing video games with Chris and his friend Darren.

June 26th-28th 2002

Things are going well. Sean is averaging about 20 minutes for setup and treatment. He hasn't moved yet. The RT team is very pleased with him. It seems there is a 13 year old boy who has trouble laying still,and Dawn told Sean she wished the boy could be like him. Sean felt a little sick after each treatment and said he felt "funny" pretty much all day every day. But He's not vomiting so thats OK. Friday the 28th, Sean was so excited to be done with the first week he literally danced out of the office. He took his Aunty-Cristy out to breakfast at Denny's and he actually ate more than two bites, YEEEESSS! We are looking forward to the weekend off. I need a nap!

June 25 2002,

A much better day. Sean woke up and immediately takes a Zofran for nausea control. we head off to the Radiation Oncology office. Sean is in and out of the radiation office in about 20 minutes. It's Tuesday so we have to go to the Chemotherapy Oncologists office on the 2nd floor for Chemo. We met a very nice Nurse -Practitioner named Lyvette who was very helpful and really made us all feel better about being there. We had to wait for a couple of hours for them to mix up Sean's Vincristine shot. Thats the chemo he is on right now. Eventually the nurse called him to a room and gave him the drug. I have one word for you "EMLA" as in Emla cream. This nifty stuff numbs the skin over Sean's port-a-cath allowing the nurse to inject him without him feeling it. Sean got a toy from the box for being so good! Pokeman cards....hmm....no surprise there!

June 24 2002,

Sean's first real treatment. Nobody slept well last night. Sean was real nervous and scared. He slept with us and that seemed to help. We arrived a little early and Sean played Sonic the Hedgehog on the Sega system in the waiting room. When they called his name, we all walked to the radiation chamber. The radiation team greeted Sean and set him up on the table. Sean was a trooper. Even though he was scared, he insisted on climbing onto the table by himself. The setup only took a couple of minutes and then we were escorted from the room. Poor Sean, all alone in there. Kelly commments that they should have a waiver we can sign to stay in the room. She'd sign in a heartbeat, I know because I would too. unfortunately they won't let us stay and we have to watch from the camera in the control room. The RT team was very helpful and explained everything that happened. After the setup, the actual radiation treatment took less than five minutes. Sean was back on his feet before we knew it was over. He was very excited that his first treatment was over. He was all smiles as we got ready to leave the office. **Note to self, don't forget to give Sean the anti-nausea medicine like you did on Monday the 24th**. Whoops, we didn't think he'd get sick right away. As soon as we got home (thank goodness he made it that far) Sean ran to the restroom and vomited. He must have thrown up 8 times between 9:30AM and 4:30PM. It was crazy. If it was going to be like this all the time we were gonna have some real problems. Around 4:30 he began to feel better. He couldn't eat anything all day. What a nightmare. 8:00PM and the home health care nurse just showed up (he was supposed to be here at 6:30PM.) Actually he got lost and I had to go get him. The nurse draws blood for labs. We are extremely unhappy with the service of this individual and his company. (We filed a complaint with the Department of Health Services for those who are wondering).

June 20th 2002,

We returned to the Radiation Oncology office for "Port films." They took x-rays of the areas they are going to treat and compare them to the setup they had done earlier. This is kinda of like a dry run for the actual treatments and it is a good time to see if Sean can lay still. Sean was face down on the table for over an hour and somehow managed to fall asleep. As the radiation team was finishing his x-rays, Sean was startled awake and moved. Bad news...we have to come back tomorrow (Fri 06-21-02) and redo the films. Sean's Radiation Therapist (RT), Dawn, said Sean did good and we would try it again without anesthesia.