November 24
2002
Well we did not get in on Wednesday as planned for chemo, there were still several more mix ups with UCLA but we did get in first thing in the morning on Thursday. Then we had to wait until after midnight for the chemo because the pharmacist first made the wrong amount of IV fluid with mannitol (a medicine to help Seans kidneys process the chemo and get it out of his body) then it took him another 5 hours to mix the chemo. It was a long, frustrating wait, but we had nice roommates to keep us company. We now have another child to add to our prayer list, D'Andre. He has tumors in his lung that were not found by his Doctor. He was instead told he had asthma for 5 months until his mom finally brought him to UCLA and then it was discovered. From what I hear, his prognosis is not too good, as his first round of chemo did not shrink the tumors. He is very sweet and he and Sean talked about their video games and movies, guy stuff. We tried to be supportive to his mother and it helped take our minds off our own problems. Sean slept through the chemo again and the next day he and D'Andre went to play video games in the game room. Sean actually ate, and we were able to come home Friday night. He hasn't really needed his anti nausea medicine since we have been home, and yesterday he felt well enough to go to a spagetti dinner at church and to Sunday school today to make advent wreaths. Now he wants to play more video games. We feel like God is really watching over us. I have seen the physical effects of chemo on other kids and am amazed at how well Sean is doing, as he should not really be feeling this good, so soon. We just Thank God for our blessings, and try to have faith in Him that this is all happening for a reason. One good thing that came out of Seans chemo being postponed a week is that his next cycle doesn't start until after Christmas, December 27th. He still needs two vincristine shots, one the Wednesday before Thanksgiving and one the following Wednesday and we expect another transfusion in a week or two. If all goes as well as last time, he should not only feel great at Christmas, but his immune system should be back up enough so he can go out in public and be around other people without worrying too much. Thanks again for the thoughts and prayers. Love, Kelly
Well we did not get in on Wednesday as planned for chemo, there were still several more mix ups with UCLA but we did get in first thing in the morning on Thursday. Then we had to wait until after midnight for the chemo because the pharmacist first made the wrong amount of IV fluid with mannitol (a medicine to help Seans kidneys process the chemo and get it out of his body) then it took him another 5 hours to mix the chemo. It was a long, frustrating wait, but we had nice roommates to keep us company. We now have another child to add to our prayer list, D'Andre. He has tumors in his lung that were not found by his Doctor. He was instead told he had asthma for 5 months until his mom finally brought him to UCLA and then it was discovered. From what I hear, his prognosis is not too good, as his first round of chemo did not shrink the tumors. He is very sweet and he and Sean talked about their video games and movies, guy stuff. We tried to be supportive to his mother and it helped take our minds off our own problems. Sean slept through the chemo again and the next day he and D'Andre went to play video games in the game room. Sean actually ate, and we were able to come home Friday night. He hasn't really needed his anti nausea medicine since we have been home, and yesterday he felt well enough to go to a spagetti dinner at church and to Sunday school today to make advent wreaths. Now he wants to play more video games. We feel like God is really watching over us. I have seen the physical effects of chemo on other kids and am amazed at how well Sean is doing, as he should not really be feeling this good, so soon. We just Thank God for our blessings, and try to have faith in Him that this is all happening for a reason. One good thing that came out of Seans chemo being postponed a week is that his next cycle doesn't start until after Christmas, December 27th. He still needs two vincristine shots, one the Wednesday before Thanksgiving and one the following Wednesday and we expect another transfusion in a week or two. If all goes as well as last time, he should not only feel great at Christmas, but his immune system should be back up enough so he can go out in public and be around other people without worrying too much. Thanks again for the thoughts and prayers. Love, Kelly
November 18
2002
Ok, maybe it's not the greatest quality picture, but Sean
loved his U.S. Customs jacket so much I had to
snap a quick
pic. Thanks again to Joe and all his friends at U.S. Customs in El Paso...you
guys Rock! (Sean's words exactly!).
P.S. I
thought Spongebob really highlighted this picture.
Hello everyone, thanks for checking back again. Sean is doing well. We did not make it to the hospital for Chemo this last weekend. It seems the Hemotology/Oncology team at UCLA forgot to set up some important tests which must be given before he can start his cycle. The Doctor's say we can come in this Wednesday to get the test and start the Chemo treatment. We'll see how it goes, we'll believe it when we see it. Sean was very happy to have the weekend off. He was very upset at the thought that he had to miss Chris's team party for flag football. Sean firmly believes God provided a miracle by allowing him to stay home and go to the party (his exact words). Since he stayed home, Sean was also able to go to the L.A. Zoo with his class today which really topped off his weekend! We'll have a couple pictures up in a day or two. Sean got a package in the mail today from a cousin of mine who works for U.S. Customs in El Paso Texas. It included a jacket, badge, and all kind of other goodies including an awesome photo collage and plaque signed by the entire Customs unit in El Paso. He also got a signed football from the Spartans, a youth football team who heard about Sean. We were overwhelmed by all of the gifts, but even more so by the fact that these people cared enough to go out of their way for him. Thank you so much to all of you. And thanks Joe, you didn't have to do all that, but Sean smiled all day, and that is really worth something. That's it for now. Thanks again for checking in and cross your fingers that we get in on Wed. Until next time. Thanks....love Rich
November 10
2002
It was amazing to watch Sean in the days after his transfusion. His color came back to his face, he had a lot more energy, he started eating even more and his anc kept going up. We even took him to a Halloween party sponsored by the Michael Hoefflin Foundation at a place called Lombardi Ranch. They had fun decorating pumpkins. Sean had to wear a mask to walk through the crowd, which he didn't like but at least we were able to go. Check out the photos on the photos page. He also went to his class halloween party. His classmates and teacher were so happy to see him and he had a lot of fun. He could only stay for a little while, but he enjoyed every minute of it. Seans anc went from 180 before transfusion to 500 the following week, then 700, then 2000, and as of last Thursday it is 5000. His immune system is almost that of a normal child. Only one little bummer though, Sean got something called fifth disease. It is just a rash and low grade fever. I guess it is pretty common in kids. We don't know how he got it, but his fever never got high enough for us to have to take him to the hospital. We were afraid he would not be able to go to Sunday school and then Hometown Buffet afterwards (one of our favorite Sunday traditions) but when he woke up this morning the rash was gone. He really enjoyed seeing his friends at church, he hasn't been since before his chemo cycle. Cycle 2 is still scheduled to start Friday November 15th. He will have to have a hearing test before they start the chemo. If the cysplatin does too much damage to his hearing they may have to lower the dose. So by the time a bed is ready, and they do the hearing test, I don't expect that he will have his chemo until very late Friday night again and hopefully we can come home late Saturday, otherwise Sunday. Thank you for continually praying for Sean, it's a long road but I know were not alone. One down, seven to go. Love, Kelly
It was amazing to watch Sean in the days after his transfusion. His color came back to his face, he had a lot more energy, he started eating even more and his anc kept going up. We even took him to a Halloween party sponsored by the Michael Hoefflin Foundation at a place called Lombardi Ranch. They had fun decorating pumpkins. Sean had to wear a mask to walk through the crowd, which he didn't like but at least we were able to go. Check out the photos on the photos page. He also went to his class halloween party. His classmates and teacher were so happy to see him and he had a lot of fun. He could only stay for a little while, but he enjoyed every minute of it. Seans anc went from 180 before transfusion to 500 the following week, then 700, then 2000, and as of last Thursday it is 5000. His immune system is almost that of a normal child. Only one little bummer though, Sean got something called fifth disease. It is just a rash and low grade fever. I guess it is pretty common in kids. We don't know how he got it, but his fever never got high enough for us to have to take him to the hospital. We were afraid he would not be able to go to Sunday school and then Hometown Buffet afterwards (one of our favorite Sunday traditions) but when he woke up this morning the rash was gone. He really enjoyed seeing his friends at church, he hasn't been since before his chemo cycle. Cycle 2 is still scheduled to start Friday November 15th. He will have to have a hearing test before they start the chemo. If the cysplatin does too much damage to his hearing they may have to lower the dose. So by the time a bed is ready, and they do the hearing test, I don't expect that he will have his chemo until very late Friday night again and hopefully we can come home late Saturday, otherwise Sunday. Thank you for continually praying for Sean, it's a long road but I know were not alone. One down, seven to go. Love, Kelly
October 24
2002
The transfusion went well yesterday. They called us to say that there was a bed ready for him and we were there by 2 o'clock. I was hoping they would move things along so we could be home for dinner but I should have known better. The transfusion started about 6:15 and he played playstation through most of it. His roommate was there for a transfusion also. He was 8 and had bone cancer. His leg was amputated and Sean was impressed at how he hops from one side of the room to the other without falling. The boys got along really well. It was one more reminder that things could be worse and we have a lot to be thankful for. Sean feels good today, he has a little more energy than ususal, and his color looks a little better. We still have to be very careful though, his immune system is still compromised. That's about it for now, his next cycle of chemo is scheduled to start in three weeks. Unless he gets a fever or needs another transfusion he won't have to do anything but his labs until then. All he needs to do is get strong enough to start the cycle over again. One down (almost) and 7 to go. Thank you for your prayers, it means a lot that so many people are checking on Sean and praying for him. Love, Kelly
The transfusion went well yesterday. They called us to say that there was a bed ready for him and we were there by 2 o'clock. I was hoping they would move things along so we could be home for dinner but I should have known better. The transfusion started about 6:15 and he played playstation through most of it. His roommate was there for a transfusion also. He was 8 and had bone cancer. His leg was amputated and Sean was impressed at how he hops from one side of the room to the other without falling. The boys got along really well. It was one more reminder that things could be worse and we have a lot to be thankful for. Sean feels good today, he has a little more energy than ususal, and his color looks a little better. We still have to be very careful though, his immune system is still compromised. That's about it for now, his next cycle of chemo is scheduled to start in three weeks. Unless he gets a fever or needs another transfusion he won't have to do anything but his labs until then. All he needs to do is get strong enough to start the cycle over again. One down (almost) and 7 to go. Thank you for your prayers, it means a lot that so many people are checking on Sean and praying for him. Love, Kelly
October 22
2002
Sean had his third vincristine shot last Thursday 10-17-02 at a cancer clinic near our house. It is usually for adults but once a month one of Sean's Doctors comes up for an afternoon. It was really nice. He had a nice reclining chair and TV with a VCR. He got to pick a toy and he chose a card game. They told us that he had gained 2 pounds! His blood counts were still good and he did not need a transfusion at that time. He had a good weekend and continued to eat well but we noticed that he was getting awfully pale. Our home nurse, Blanche came yesterday to draw labs and since nobody called we assumed that his counts were still good. Then Blanche called us late last night when she got home to make sure UCLA called us to schedule a transfusion. I told her they hadn't but that I would call first thing in the morning. It's a good thing I did because UCLA claims not to have his lab results. They are now trying to find a time to squeeze him in to their outpaient transfusion area but I have no idea how long that takes. I guess they get pretty backed up. They are not overly concerned yet because he is not having any symptoms. The symptoms are ususally shortness of breath, dizziness, etc. This is because there are not enough red blood cells to carry oxygen throughout his body. I asked what happens then, and she said that it could get serious, such as causing problems with his heart not beating properly among other things. We are not to that point yet but if we were, he would be admitted to the hospital for the transfusion. So we just wait for now, washing hands a lot and being very careful. His ANC is only 180 and last week it was 1201. A normal person is usually several thousand. Anything over 1000 means he has a fairly low risk of an infection, 500 to 1000 he is at risk and under 500 means he is at high risk of infection. We will continue to wait and pray. I hear that kids usually feel so much better after a transfusion. Sean was a little upset about it, but I compared it to popeye eating a can of spinach and it seemed to help. Thanks for all your thoughts and prayers and I'll let you know how it went. Love, Kelly
Sean had his third vincristine shot last Thursday 10-17-02 at a cancer clinic near our house. It is usually for adults but once a month one of Sean's Doctors comes up for an afternoon. It was really nice. He had a nice reclining chair and TV with a VCR. He got to pick a toy and he chose a card game. They told us that he had gained 2 pounds! His blood counts were still good and he did not need a transfusion at that time. He had a good weekend and continued to eat well but we noticed that he was getting awfully pale. Our home nurse, Blanche came yesterday to draw labs and since nobody called we assumed that his counts were still good. Then Blanche called us late last night when she got home to make sure UCLA called us to schedule a transfusion. I told her they hadn't but that I would call first thing in the morning. It's a good thing I did because UCLA claims not to have his lab results. They are now trying to find a time to squeeze him in to their outpaient transfusion area but I have no idea how long that takes. I guess they get pretty backed up. They are not overly concerned yet because he is not having any symptoms. The symptoms are ususally shortness of breath, dizziness, etc. This is because there are not enough red blood cells to carry oxygen throughout his body. I asked what happens then, and she said that it could get serious, such as causing problems with his heart not beating properly among other things. We are not to that point yet but if we were, he would be admitted to the hospital for the transfusion. So we just wait for now, washing hands a lot and being very careful. His ANC is only 180 and last week it was 1201. A normal person is usually several thousand. Anything over 1000 means he has a fairly low risk of an infection, 500 to 1000 he is at risk and under 500 means he is at high risk of infection. We will continue to wait and pray. I hear that kids usually feel so much better after a transfusion. Sean was a little upset about it, but I compared it to popeye eating a can of spinach and it seemed to help. Thanks for all your thoughts and prayers and I'll let you know how it went. Love, Kelly
October 14 2002
Hello everyone, sorry about the wait for an update. We have
been busy and just haven't had the time. So...where to start? Well, Sean seems
to be doing really good since coming home from the hospital after his first
Chemo session. We went back to the clinic on Friday 10-11-02 and Sean got his
Vincristine shot. He isn't really having any negative symptoms for which we are
really thankful. He has complained a couple times about his ankle hurting,
but it goes away. Hopefully it is nothing, but we will mention it to the
doctors to be safe. He still isn't eating all that much and for the
first time since he was about 4, he weighs less than 50 pounds (49.62lbs.). He
did however ask us for some steak last night and he ate some meatloaf too. We
think his body might be craving protein, but whatever it is I hope it helps him
gain some weight back. Sean's blood counts have gone down a little since last
weekend (ANC 1201) but the doctors aren't worried about transfusions yet. Kelly
and I both gave blood last week just in case. The doctors say his count will
continue to drop through this week, so we will be keeping an eye on them.
Blanche, Sean's home nurse, comes today at noon to take some blood for labs. We
will know by tonight what the counts are. For now Sean says he feels good and he
has a good amount of energy, and that's just about all we can ask for. Sean met
his home school teacher on Saturday. Mrs. Brown is very nice and a wonderful
teacher. She also goes to our church, so we will be seeing a lot of her. Sean
seemed comfortable with her, although he did test her limits with a couple of
really stubborn temper tantrums. She handled it well though and I think we are
really going to like her. She said Sean is very bright and she doesn't think
there will be any problems advancing him to 2nd grade as long as he does the
work. I think we covered everything thats gone on over the last week or so. We
have one more Vincristine shot coming up this Thursday (10-17) and then we will
have three weeks off until the next cycle starts. So, one cycle down and only
seven more to go. Hopefully they will all go as smoothly as this one has. That's
it for now, we'll try to update a little more frequently in the future. Thanks
once again for checking in. Keep him in your prayers, I think its working...bye
for now ..love Rich
P.S. Thanks to everyone who emailed me about donating
blood, but now our medical group says they don't cover transfusions at UCLA, we
may have to go to Northridge Hospital. I spoke to a supervisor who
authorized the first two transfusions to be done at UCLA but after that we may
have to go to Northridge. So if you really want to give blood, my best
recommendation for right now is to just make an appt. at your local red cross
and someone somewhere will need it. As for Sean he will have our donated
blood if he needs it, and in the meantime we are looking into switching
insurance plans. I'll let you know if anything changes. Thanks,
Kelly
October 6 2002
