Here is Sean at the Irwindale Speedway on Saturday August 30th. The Michael Hoefflin Foundation was given the use of a VIP suite for the evening. We had a great time. I will be getting more pictures of the races and other stuff up on the page by this time next week. Thanks....Rich

September 9, 2003
I finally have a free minute and wanted to do a quick update.  First off, I called Dr. Siegel's office on Friday the 5th and still have not received a call back.  I hate to be a pain, but this is getting downright ridiculous.  That same day Sean came down with a sore throat so I requested that labs be drawn and I took him to the pediatrician for a strep test.  The strep test was negative, but his labs have actually dropped.  His ANC went from 1500 on August 11th to 650 on September 5th.  His platelets have also dropped from 82 to 76.  I was concerned about Sean being able to attend school with an ANC under 1000, but I am told he can continue to go.  If he catches anything, such as a cold or flu it will take his body a little longer to fight it, but they are saying he can still attend unless they go under 500.  Which led to my next question about why they are dropping.  Apparently this is something that his Dr's have already discussed and are concerned about.  When he has his MRI on the 16th, Blanche will also draw labs and if his counts are still dropping he will have to have a bone marrow biopsy.  The biopsy will tell if there is any and/or how much activity is going on in the bone marrow.  It is a possibility that the whole reason chemo was stopped early, the bone marrow not recovering and him getting some type of bleeding disorder, may have already happened.  I just got off the phone with Lavette so we haven't had time to absorb it all yet, but we refuse to panic.  It's in God's hands and I know we didn't go through all this for nothing.  We will continue to pray that this is not the case, it is possible that his fighting a cold could have lowered his counts as well.  We thank God every day that Sean is doing so well, and we have faith that this will all turn out OK.  As a parent and human being though, I can't help but remember the last time he took his CCNU (that's the chemo that's mostly responsible for suppressing the bone marrow).  There were seven pills he had to take at home, and he kept putting it off and putting it off and there we were at midnight, May 9th in the kitchen trying to give him his first pill.  He was so upset about having to take it,he threw it up in the sink almost immediately and we had to rinse it off and dry it on a paper towel so he could take it later.  We were so worried that it was the middle of the night and a weekend, we probably wouldn't be able to get another one.  We then spent the next 4 hours trying to get him to take the rest of the pills.  We laid in bed with him crying and begging not to have to take any more, trying to watch the cartoon channel with him to take his mind off of it and keep him calm so he didn't throw any more up.  The deal was one every half-hour until they were gone.  Even though I know we were doing what we thought was best for him, I can't help but feel guilty and wonder what might have happened if we didn't make him take them.  Whatever happens now is in God's hands and all we can do is pray that his bone marrow can recover.  We knew that the chemo being over didn't mean "it was over" but we didn't expect this. Please continue to pray for him, he is very upset about his MRI, he hates having to go through them, especially the long ones where they do the brain and spine.  And also please pray that his bone marrow recovers and he is able to keep getting back to life as a seven year old should.  Love, Kelly  

August 26, 2003
Hi everyone!  It's been a while since the last update, so I figured it was about time.  I am still waiting to hear back from Dr. Siegel regarding additional data on kids who have stopped this protocol early.  He is going the extra mile, so I don't want to bug him too much, but I will leave a message for him within the next day or two if I don't hear anything.  In the meantime everyone started school last week, even Sean.  Chris started last Monday morning, I started last Monday night, and Sean and Brianna started last Thursday.  I anticipated Sean starting off going half-days, but he has been staying the whole day.  His teacher says he is doing great.  He doesn't know anyone in his class because we went from a year-round schedule to a traditional schedule and all the kids were mixed up into different classes.  He was a little disappointed at first, but on his first day he came home and told me he made a friend named Holly.  I know he will continue to make friends, it just takes time.  In the meantime he can see his old friends at recess, but he  gets kind of discouraged because of his coordination.  He tries to play foursquare but he has trouble with his timing kicking the ball when it comes to him, so when he misses it he's out.  I know it's frustrating for him, but hopefully with practice he'll get it.  It breaks my heart, but he takes it all in stride.  He fell going into school yesterday and ended up in the nurses office for a band-aid.  When I found out, I felt so bad that I wasn't there and told him next time to have the nurse call me.  He just looked up and said "It's OK mom, that's what the nurse is there for."  He might actually be doing better than I am handling all of this.  We are very proud of him and thankful that he is doing so well.  His MRI is still scheduled for September 16th so please please please pray that everything goes well.  He still has his port-a-cath so Blanche is coming with us and Rich is going to take the morning off of work to go too.  It's going to be a long one, it's the brain and the spine this time, so it should be at least 2 to 3 hours.  I will continue to bug Rich to get some new pictures on the site. It's been a crazy couple of weeks,especially with me at school at night he's busy with the kids, but he'll get them up soon.  Love, Kelly    

August 13, 2003
Sorry it's been so long since we've done an update.  We still don't have our "final answer" from CHLA.  Sean's GFR was 79, and Dr. Siegel said that was "decent kidney function."  There doesn't appear to be too much damage to his kidneys from the chemo, but he hasn't recommended any more cysplatin yet either.  The last I heard, he was going to check with Dr. Roger Packer.  From what I understand, Dr. Packer helped design the protocol that Sean was on.  Dr. Siegel wants to see if there is any data on kids who have stopped chemo early on this protocol, or if there is another type of chemo recommended for kids who do stop early.  I got the impression that he won't be recommending any more chemo for Sean, but he wanted to look into it thorougly before saying for sure.  I really appreciate all the time and effort Dr. Siegel has put into this second opinion.  I feel like he is going above and beyond what he needs to do to put my mind at ease.  In the meantime, I told Seans school that he will be returning next week and everyone is very excited.  I'm not sure if he will need half days at first or not, we are going to play it by ear and see how he does. He put on some more weight, he is now 53.5lbs.  He started out at 62lbs last year, and during chemo he bottomed out at 47, so we are excited that it is finally going in the right direction.  We had a great time at Lake San Antonio last week.  It was a nice break to get away and relax.  I'm waiting for my Aunt to send me some pictures so Rich can post them.  I was terrible about taking pictures, so Thank God for family.  She has a cute one of him feeding a deer.  Sean also took pictures last week with some other kids from the Michael Hoefflin Foundation.  They will be on the cover of the Magazine of Santa Clarita again this September.  He also "made his wish!"  He wished for a Disney Cruise.  Hopefully we will be able to go in January, when we are all out of school.  So it's been a pretty busy month so far, but in a good way, I guess.  His next MRI is scheduled for September 16th, so we continue to pray that all goes well with that.  Blanche is coming with us again, so we are very grateful.  Rich is also going to try and get a half day off of work to go too.  This one is a brain and spine MRI, so it will be pretty long, about 2-3 hours.  Needless to say, that's a long time to lay still for a 7 year old, so the more support he has the better.  Thanks again for all the prayers, and I'll do another update as soon as I hear anything.  Love, Kelly