July 30, 2003
I just
wanted to do a quick update and let everyone know that we still haven't heard
back from the Doctor yet. I was hoping to hear something today, but that
wasn't the case. We are going away for the weekend and hopefully we will
have some news when we get back. In the meantime Sean is looking forward
to a weekend of camping and riding around in cousin Doug's boat. Thank you
for continuing to pray, I beleive that God is watching over Sean. Love,
Kelly
July 28, 2003
Hi everyone, our visit to CHLA today went well. Dr. Siegel was very thorough. He went over several things we need to know regarding long term follow up care. One thing is that radiation itself can cause secondary cancers. Therefore besides regular mri's Sean also needs a yearly chest x-ray. He said anywhere in the radiation field, not just the brain and spine, but the stomach area, chest etc. because it was exposed to some radiation while his spine was being treated. He also mentioned that Sean needs to have an endocrinological exam within the next 3 to 4 months. Usually the radiation damages the gland in the brain that produces the growth hormone. I want to say the pituitary gland but I'll have to double-check that. It needs to be done before the bones fuse, if that happens he will never grow. And children that have had radiation, their bones fuse sooner than most kids do. I don't know exactly when that is, but I'm glad to know all the information so I can schedule whatever tests he needs. On to the part about stopping chemo, he said that he agrees with the decision that Sean should not have any more CCNU. The CCNU is what depletes the bone marrow. As far as the cysplatin and vincristine go, he wants Sean to have a GFR tomorrow. I don't know how to properly explain it, I just know that it's an accurate way to measure kidney function. They will have to access his port and inject a dye, and then he will get some sort of a scan. It is a much more accurate way to measure kidney function than a creatine clearance test. He said that Sean’s creatine clearance was very low, and if that is the case, the cysplatin possibly should have been stopped sooner than cycle 6. But it's also possible that the creatine clearance test was inaccurate and he may be able to tolerate the cysplatin. But the first step is to have the GFR tomorrow, and see where his kidney function is. Then he will talk to their brain tumor board and see if there is even any point to giving cysplatin now, since it's already been so long. After that he will call us on Wednesday and give us his final opinion. Please continue to pray for Sean, and for all the other kids that have to suffer through this. Love, Kelly
July 22, 2002
Today's meeting with Dr. Feig went really well. I feel a whole lot better about stopping the treatments. Dr. Feig feels that there will be no benefit for Sean to receive any more chemotherapy. He feels that Sean received 100% of the radiation therapy (which is the main treatment,by the way) and 75% of the chemo he was supposed to get. If he gets any more chemo, his body may not be able to recover. He also said there is no benefit to a lowered dose. The brain has a way of protecting itself from things, and in order for the chemo to even affect the brain, it has to be a higher dose. If a low dose is given, it probably won't even get into the brain and the rest of his body will still be affected negatively. The next step now is the second opinion at cHLA next Monday. If they agree, then I will be able to sleep at night comfortably. I am already much more comfortable than I was. Dr. Feig said that stopping treatment is usually more traumatic for parents than starting it. I can really see his point. He wants an MRI of the brain and spine sometime in September, and then we have a neurology/oncology meeting in October to discuss the long term care. There are many issues that come up over the years after treatment. Some physical, some mental, but they want to be prepared to deal with anything that comes up. We were also told that Sean would only need labs once a month now, and can even go back to school in August. That also means that eventually our home health will stop and I don't know how we are going to deal without Blanche. There is a great nurse at the UCLA (adult) cancer center in Valencia who is a pediatric nurse that can draw them if need be, but we are going to try and keep our home health benefits long enough to get us through the MRI because it is such a comfort for Sean to have Blanche come with us and administer the dye through his port. I also have to mention that Chris Hoefflin was kind enough to come with us today, and it was so nice to have him there. Rich had to work and Chris was kind enough to offer. He asked some questions that I may not have thought of, and it was just really comforting to have him there. So all in all, I'm very pleased with how today went. Thank you for praying, and I'll do another update on Monday after the second opinion. Love, Kelly
Today's meeting with Dr. Feig went really well. I feel a whole lot better about stopping the treatments. Dr. Feig feels that there will be no benefit for Sean to receive any more chemotherapy. He feels that Sean received 100% of the radiation therapy (which is the main treatment,by the way) and 75% of the chemo he was supposed to get. If he gets any more chemo, his body may not be able to recover. He also said there is no benefit to a lowered dose. The brain has a way of protecting itself from things, and in order for the chemo to even affect the brain, it has to be a higher dose. If a low dose is given, it probably won't even get into the brain and the rest of his body will still be affected negatively. The next step now is the second opinion at cHLA next Monday. If they agree, then I will be able to sleep at night comfortably. I am already much more comfortable than I was. Dr. Feig said that stopping treatment is usually more traumatic for parents than starting it. I can really see his point. He wants an MRI of the brain and spine sometime in September, and then we have a neurology/oncology meeting in October to discuss the long term care. There are many issues that come up over the years after treatment. Some physical, some mental, but they want to be prepared to deal with anything that comes up. We were also told that Sean would only need labs once a month now, and can even go back to school in August. That also means that eventually our home health will stop and I don't know how we are going to deal without Blanche. There is a great nurse at the UCLA (adult) cancer center in Valencia who is a pediatric nurse that can draw them if need be, but we are going to try and keep our home health benefits long enough to get us through the MRI because it is such a comfort for Sean to have Blanche come with us and administer the dye through his port. I also have to mention that Chris Hoefflin was kind enough to come with us today, and it was so nice to have him there. Rich had to work and Chris was kind enough to offer. He asked some questions that I may not have thought of, and it was just really comforting to have him there. So all in all, I'm very pleased with how today went. Thank you for praying, and I'll do another update on Monday after the second opinion. Love, Kelly
July 21, 2003
Hi everyone. Seans labs for today just came in. His platelet count is up to 73. We have a meeting with Dr. Feig at UCLA tomorrow morning to ask our many questions. Unfortunately our second opinion at CHLA for tomorrow afternoon had to be postponed until next Monday because the Pathology Department at UCLA did not send the slide they were asked to send. Lavette requested it a week ago and everything else made it last week, but for some reason the pathology slide did not. Lavette went in today to see what was taking so long and from what I understand, they just "didn't get to it." The earliest they can get it to CHLA is Thursday, so our new appointment is Monday the 28th at 1pm. I am a little upset but not the least bit surprised. My main concern is that if the Doctor at the second opinion recommends another treatment, too much time will have passed from his last chemo. We are now four and a half weeks late on cycle 7. We just have to trust that God is watching over Sean and everything will work out. Thanks for checking in and I'll do another update tomorrow afternoon after we see Dr. Feig. Love, Kelly
Hi everyone. Seans labs for today just came in. His platelet count is up to 73. We have a meeting with Dr. Feig at UCLA tomorrow morning to ask our many questions. Unfortunately our second opinion at CHLA for tomorrow afternoon had to be postponed until next Monday because the Pathology Department at UCLA did not send the slide they were asked to send. Lavette requested it a week ago and everything else made it last week, but for some reason the pathology slide did not. Lavette went in today to see what was taking so long and from what I understand, they just "didn't get to it." The earliest they can get it to CHLA is Thursday, so our new appointment is Monday the 28th at 1pm. I am a little upset but not the least bit surprised. My main concern is that if the Doctor at the second opinion recommends another treatment, too much time will have passed from his last chemo. We are now four and a half weeks late on cycle 7. We just have to trust that God is watching over Sean and everything will work out. Thanks for checking in and I'll do another update tomorrow afternoon after we see Dr. Feig. Love, Kelly
July 18, 2003
I just wanted to do a quick update and let everyone know I don't have yesterdays labs. It looked like they were lost by unilab, but it turns out they were never picked up at Facey Medical Group. They say they should still be able to process them, so hopefully we will know tonight. Otherwise we have to wait until Monday. Dr. Moore is on vacation, so we will possibly be seeing Dr. Feig next Tuesday for a consult, and the second opinion at CHLA will be the same day at 3pm. Thanks for keeping Sean in your prayers. Love, Kelly
I just wanted to do a quick update and let everyone know I don't have yesterdays labs. It looked like they were lost by unilab, but it turns out they were never picked up at Facey Medical Group. They say they should still be able to process them, so hopefully we will know tonight. Otherwise we have to wait until Monday. Dr. Moore is on vacation, so we will possibly be seeing Dr. Feig next Tuesday for a consult, and the second opinion at CHLA will be the same day at 3pm. Thanks for keeping Sean in your prayers. Love, Kelly
July 15, 2003
I bet you all
didn't expect another update so soon. Well I got a call from our favorite
nurse practitioner at UCLA this morning, Lavette, and she told us that the brain
tumor board there made a decision yesterday regarding Seans remaining two chemo
treatments. The way I understand it, is that the bone marrow is involved
in producing the platelets. Because the bone marrow is not recovering as
quickly as it should from all the chemo, it is not producing enough
platelets. This explains why his platelet count isn't going up. They
are afraid that if he gets any more chemo, his bone marrow may NEVER recover and
he could have a bleeding disorder for the rest of his life. This probably
isn't the best explanation, but it's all the info I have right now. We
scheduled an appointment with one of our favorite Doctors, Dr. Moore for next
Tuesday and we can ask all our questions then. We may also consider a
second opinion at either CHLA or City of Hope, not because we don't agree with
this decision, but because this is our precious angel and we want to make sure
that this is the best thing for him. In the meantime, please continue to
pray for Sean, and his Doctors, that they do what's best for Sean. One of
our wonderful Pastors, Pastor Dan pointed out a few things this morning that
made me feel better. One of them is that we look to Jesus, and Jesus
healed wherever he went. He says that God wants us well and whole, so that
is what I would like everyone to pray for. Thanks again, and we will still
update as to his platelet count on Thursday, and then again after seeing Dr.
Moore next Tuesday. Love, Kelly
July 14, 2003
Hello
everyone. Sorry about the delay in getting an update out. We keep
waiting for Seans platelets to go up so we can tell everyone the chemo date, but
his they are still only at 64. They are just taking their own sweet time
to come up. His chemo is now over 3 weeks delayed and all we can do is
wait. We have mixed emotions about this, we start to worry about it, but
we have to let it go and have faith that God knows whats best for Sean and this
must be it. His next labs are scheduled for Thursday the 17th, so we'll
see what happens. Until then, we have faith that this break must be what
Sean needs. His hair has grown back to the point of looking like he has kind of
a fuzzy buzz cut. It's very cute. I keep telling him I'm going to
spike it up, and he says "ahhh mom!" He is also eating constantly and has
put on another half pound. He now weighs 50 and a half pounds. Don't
forget the half, Sean is very proud of that half pound. I'm sure we
mentioned the story a few months ago of his standing on the scale while eating a
box of crackers trying to put on some weight. We had to tell him that it
takes a little more time than that. We have been to the community pool
three times already this week. I normally don't take him because of the
fact that it's used by so many people and who knows what kind of germs are in
there, but his ANC is bouncing from 1800 to 2200 so we have been taking
advantage of it. He loves to swim, and I think it's good for him
too. It's been so hot here, over 100 degrees every day, so it's nice to
get out of the house and do something cool instead of being stuck inside all
day. Thanks again for all the prayers and support. Love, Kelly
July 1 2003
Hello everyone, hope this update finds you all doing well.
I wanted to give everyone a quick update and an apology. The apology first.
Comcast Cable bought out AT&T Broadband, so we have a new host for our web
page. The transition from AT&T to Comcast happened over the last day or two,
and there have been some problems. I am irritated by this as we gave out Sean's
web site address to a ton of people at the SCV Relay for Life, and now I'm sure
these people are wondering what kind of messed up site this is. Anyways, most of
the problems seem to be fixed. I noticed the e-mail links on the main page
weren't working but they seem to be OK now. If you have tried to email Sean and
got an error message, then just cut and paste or click this--
Andersonkr@comcast.net -- I know
that this is our old address, but it should forward to us. I don't know
if any of you ever noticed the counter on the bottom of the main page, but
they have reset that as well. The count was very close to 5700 before the
reset. Oh well, we'll just have to build it up again. So, Sean is feeling
great!! Unfortunately, his platelet count was 53,000 on Monday (down another
1000). It looks like we may have to wait till next week for chemo. In
the mean time, Sean is as full of energy as he has been in the last year. I know
his little body is taking advantage of the break. He has even gained a little
weight! We had a great time at the American Cancer Society's Relay for Life this
last weekend. As soon as I'm sure there are no more problems with Comcast, I
will post the pictures. A bunch of kids from Sean's class were there and
everyone seemed to really enjoy themselves. I want to really thank Stephanie
Medieros and Tracy Cook for putting together Sean's team and for keeping
everything under control. I spoke at the Luminary ceremony. I think I could have
done a lot better, but people complemented me, so it must not have been that
bad. All in all, the event was well worth doing. Ok I think that's all for
now. I will be doing a lot of work on the page over the next week, so check back
in and see whats going on. Thanks for stopping by....Love Rich
June 26, 2003
We found out this morning that Seans platelets are still 54. He still has a ways to go before reaching 75, where he needs to be to begin cycle #7. We asked God to do what was best for Sean, and this is our answer, so now we will just enjoy the weekend. This also means he is able to go to vacation bible school next week, so he is pretty excited. We don't have a new date set yet, if Mondays labs show a platelet count of 75 we will schedule it for Thurday night, July 3rd. If not we wait for Thursday's labs and if they are good then it will be Monday July, 7th. If it goes beyond that I have no idea what they do next, but we will cross that bridge if and when we get there. We still don't have an "official" reading on the mri from UCLA yet, (yes, it's been been over 3 weeks). The first report was clear and there is no reason for UCLA's Dr's not to agree, but it frustrates me that if there was no preliminary reading done by University Imaging then we would have pulled all our hair out by now with all the waiting. This is a perfect example of why we don't have Seans mri's done at UCLA. At some point there will have to be a sit-down with his oncologists because he will be getting mri's regularly for years and years and I can't imagine waiting this long every time. Enough venting about that, I'll do another update on Monday with the platelet count and Rich should have some pictures of the relay for life to post after Saturday, so check back. Thanks again for remembering Sean in your prayers. Love, Kelly
We found out this morning that Seans platelets are still 54. He still has a ways to go before reaching 75, where he needs to be to begin cycle #7. We asked God to do what was best for Sean, and this is our answer, so now we will just enjoy the weekend. This also means he is able to go to vacation bible school next week, so he is pretty excited. We don't have a new date set yet, if Mondays labs show a platelet count of 75 we will schedule it for Thurday night, July 3rd. If not we wait for Thursday's labs and if they are good then it will be Monday July, 7th. If it goes beyond that I have no idea what they do next, but we will cross that bridge if and when we get there. We still don't have an "official" reading on the mri from UCLA yet, (yes, it's been been over 3 weeks). The first report was clear and there is no reason for UCLA's Dr's not to agree, but it frustrates me that if there was no preliminary reading done by University Imaging then we would have pulled all our hair out by now with all the waiting. This is a perfect example of why we don't have Seans mri's done at UCLA. At some point there will have to be a sit-down with his oncologists because he will be getting mri's regularly for years and years and I can't imagine waiting this long every time. Enough venting about that, I'll do another update on Monday with the platelet count and Rich should have some pictures of the relay for life to post after Saturday, so check back. Thanks again for remembering Sean in your prayers. Love, Kelly
June 20, 2003
Hi, I just wanted
to do a quick update and let everyone know that Sean is NOT in the hospital
starting his 7th round of chemo as planned. His kidney function is back up
to where it should be, his hearing is still good, but his platelet count is too
low. His ANC is at 1800, which is good, homoglobin and hematocrit are also
on their way up, but for some reason his platelet counts are dropping.
They need to be at 75,000. Monday the 16th they were at 70,000 and we
thought they would be up in time for chemo but they actually dropped to
54,000. For now the chemo is rescheduled to Friday June 27th with an
overnight in the hospital (I know, he'll miss the relay for life) but it will
all depend on whether or not his platelet count goes up. So basically we
wait for next weeks labs and just go with the flow. If I've learned one
thing through all of this it's to just give it to God and let it go.
Everything will work out for the best. We plan on enjoying the weekend,
maybe we can finally go see Finding Nemo. That's it for now, I'll do
another update next week when we know for sure what's going on. Love,
Kelly
June 13, 2003
We got a call from UCLA and the preliminary results are CLEAR! Thank God! We are so thankful and so relieved. Even though you try to have faith that everything is OK it is still very stressful. The kids (and Rich) had fun last night at Mountasia with the Michael Hoefflin Foundation. They have all sorts of cool games and a Farrell's Ice Cream Parlor. I had to go to school but I think Rich took some pictures to put on the website. Hopefully we'll have all the new pictures posted sometime this weekend. Thanks for all the thoughts and prayers, I know God is really watching over Sean. His next chemo is scheduled for June 20th and he is going to see Dr. Feig on Wednesday the 18th to go over his kidney funtion and hearing tests. Dr. Feig will tell us on that date whether or not Sean will go back to the full dose of cysplatin, or if will be reduced or even eliminated again. On a different note, a friend of Sue Hoefflins quilting group is making quilts for kids with cancer, and they need old worn out jean material. So if anyone has any old jeans (any color) they are getting rid of anyways you can save them for me and I can give them to Sue. Thanks again for everything. Love, Kelly
We got a call from UCLA and the preliminary results are CLEAR! Thank God! We are so thankful and so relieved. Even though you try to have faith that everything is OK it is still very stressful. The kids (and Rich) had fun last night at Mountasia with the Michael Hoefflin Foundation. They have all sorts of cool games and a Farrell's Ice Cream Parlor. I had to go to school but I think Rich took some pictures to put on the website. Hopefully we'll have all the new pictures posted sometime this weekend. Thanks for all the thoughts and prayers, I know God is really watching over Sean. His next chemo is scheduled for June 20th and he is going to see Dr. Feig on Wednesday the 18th to go over his kidney funtion and hearing tests. Dr. Feig will tell us on that date whether or not Sean will go back to the full dose of cysplatin, or if will be reduced or even eliminated again. On a different note, a friend of Sue Hoefflins quilting group is making quilts for kids with cancer, and they need old worn out jean material. So if anyone has any old jeans (any color) they are getting rid of anyways you can save them for me and I can give them to Sue. Thanks again for everything. Love, Kelly
June 10 2003
Sean and his new buddy Alejandro Moreno...Sean had just got
done saying
Naa..Whats up Doc?..(I'm not
kidding)
Thanks Alejandro, you and Ezra were great
company!
I just wanted to do a quick update and say how much we
appreciate all the emails we have received today. We are totally
overwhelmed by how many people have sent emails and have called today. We
are still waiting for the results, but as far as the mri itself, Sean did really
good. He cried for his Daddy on the way there, but once we got there he
was very brave and laid still like he was supposed to. Once it was over
and we were getting ready to leave, Rich showed up. Seems he was as upset
as Sean was and decided to use his lunch break to drive up from Burbank and see
Sean. They both felt much better afterward and then Sean and I were off to
drop off a set of films at UcLA for them to read also. They usually take a
couple weeks to read them, so thankfully University Imaging will read them also
and they usually give a preliminary report in a day or two. We will do
another update as soon as we get them. Thanks for all the prayers and
support. Love, Kelly
P.S. Sean and I (this is Rich now!!) just got home from a
dinner with the Los Angeles Galaxy Soccor Team. Sean got to meet all the players
and they signed autographs for him. We sat at a table with #15 Alejandro Moreno
and #17 Ezra Hendrickson and Ezra's Fiance (I think..sorry). What a great group
of people. Sean really had a great time (Thanks Alejandro...) I took a bunch of
pictures, so there will be another page of pics as soon as I get the time to
work on it. Probably this weekend. I'm sorry about the delay in updates. Kelly
started school to become an oncology nurse (I wonder why) and I am still getting
used to my new work schedule. I promise I will get some things done this
weekend. Please check back then and I should have the pics ready..as always,
thanks for caring, your prayers and encouragement get us through this....see you
soon ..love Rich