March 27 2003
OK, here's the run
down..... Sean had his birthday party tonight at Chuck-E-Cheeses. Most of his
class showed up and we all had a great time!! Sean said it was the best birthday
he ever had!!! I managed to take a few pics between manning the video camera and
keeping track of the kids. Please take a moment to go to
Sean's photo page to see the pictures. Use the
"Birthday2" link to get to them. Sean's counts came in this afternoon and they
are still at about 2200. We were hoping for a little more, but I guess it just
isn't going to happen right now. Sean is scheduled to start his 5th cycle
tommorrow at UCLA. He and I will stay the night and will probably come home
Saturday afternoon. I say probably because Sean has gotten a slight fever the
last couple of cycles right as we were leaving the hospital. We want to make
sure that he doesn't leave with one this time, so we will be monitoring closely.
We got a call from one of the Nurse Practitioners at UCLA today and she
said they had reviewed Sean's MRI's and they looked good. We have been upset for
the last few days because UCLA told us last week that there might be a problem
with Sean's Pineal Gland as it was slightly swollen. This gland is in the same
area where the tumor was located and they wanted to get a better read on the
MRI. That being said they proceeded to take over a week to get back to us, and
they still haven't told us the Pineal Gland is alright. I plan on "discussing"
this unacceptable wait time with the doctor(s) tommorrow, but for now everything
looks good. It's funny, I usually would be really excited about news like this,
but I'm so angry about the wait time that I can't even enjoy the
news. I know I should be more understanding, but it's my kid with cancer,
not theirs, and I feel like they just don't care about our emotions.
Ok...off the soapbox for a moment. Thank you so very much to all of you who have
been praying for Sean. We really feel that the Lord is with us right now and we
really think that all of your prayers have really helped us to feel God in our
lives. It's a wonderful gift that really can't be compared to anything. Thank
you for everything. I am going to get some sleep now, so please keep those
prayers coming. I will update again as soon as we get back from the hospital.
Until then, take care and God blees you all.....Love...Rich
P.S. the "Happy Birthday" song will be taken off the page
on the next update.....It keeps scaring the heck outta me when I check the page.
Darn kids never turn the speakers down after they play their video
games....;-)
March 22 2003
Hi everyone, we have some good news...the preliminary
results from the MRI are in and according to the doctor there is no intercranial
mass or indication of metastisis and the spine is clear....THANK YOU
GOD!!!...The results are not final until the doctors at UCLA give their reading,
but we are 99.99999% sure they will match the preliminary reading, so we
are very relieved to say the least. Sean's counts on Thursday 03-20-03 were at
about 1750...down a little from Mondays 1800. The chemo is still suppressing his
white blood counts and other things. Hopefully by next week his counts will be
up around 3000 at least. Sean's Grandma Nancy came to visit today. She is
staying the night tonight along with Sean's Uncle Matty. We are looking forward
to spending time with both of them and I will be sure to snap a few pictures for
the updates page. That is all for now, ...oh yeah, we are trying to plan a
birthday party for next Thursday (03-27-03) at Chuck-E-Cheeses. I will
definately be getting some pictures out on that. Sean has labs on Tuesday, and a
hearing test later this week. Pray for everything to continue going well and as
always, thank you all for your prayers and support. I will update in a few days
with new lab counts....until then.....thanks....love Rich
March 18 2003
Wow!!....what a day!..Sean's MRI went well today. We
won't get the final reading for a couple of days, but at least we're done with
it for now. We arrived for the MRI at about 10:15AM. We filled out some
paperwork and were ready for the scan at about 10:30. Sean's home health care
nurse, Blanche, was kind enough to come with us to access Sean's portacath to
administer the dye they use for contrast in the scans. While she was there, she
also drew his labs (which I'll tell you about later:-). The actual scan started
at about 11:00am and didn't end until about 1:30PM...that's right ...2 and 1/2
hours!!! Sean had to lay still the entire time with only short breaks every
half hour or so. Sean was a trooper the whole time. He did manage to sleep for
about 30 minutes, but the rest of the time he just layed there like a little
man. He was trying so hard to lay still, but every once in awhile he would tap
his toes in rythm with the machines noises. We would look at him and he would
smile at us in the mirror they gave him to see us with. The toe tapping didn't
seem to affect the scans so all in all everything went great. I saw some of the
scans for myself and thought they looked clean. However since I am not a medical
doctor (or any other kinda doctor) we will have to wait for the official reading
from UCLA. We should get a preliminary reading from the the place that took the
scan, but UCLA won't accept anything but their doctor's reports. We will post
the results as soon as we get them. Onward and upward...We left the MRI and
picked up a gameboy game for Sean with his birthday money (thank you
everyone!!), as a reward for doing so well. After picking up some fast food for
lunch, we drove to UCLA to drop off the scans, and to go to a Pulmonary Function
Test. The tests went well, although I personally felt they were geared more
towards adults and Sean had a hard time understanding the procedure. He was
asked to blow into a mouthpiece several times and at several speeds. He had to
inhale and hold his breath, exhale and hold it, and everything in between.
According to the technician he did fine, but I really didn't like the whole
procedure. We met up with Sean's Nurse-Practitioner, Lavette, who took the films
from us and sang happy birthday to Sean. Well by the time we left UCLA it was
close to 5:00PM, so we got a little taste of that good-ol LA traffic. It wasn't
as bad as we thought though and we were home before 6:00. So, that's about it.
We got home and found Sean's lab results had been faxed to us. His ANC shot up
to 1803, from 1008 last Thursday. We have about a week and a half until the next
cycle starts, so now that his counts are on the rise we will try to do some fun
stuff and even have that long awaited party for his birthday. I think that
covers everything for now. again, as soon as we find out anything about the MRI
results, we will post it. Thank you all again for caring and praying for us. God
bless you all......love Rich
March 17 2003
Well, it's the night before Sean's MRI and of course I'm
feeling a little apprehensive. Sean is also upset since he knows he's
going to have to lie still for so long. They are going to scan both his brain
and spine, with, and without contrast, so it will take awhile (1 to 2 hours). He
has done this before, but it still bothers him to be going through it. This is a
pretty important scan (aren't they all though??) mainly because we are half way
through treatment and we need to ensure this thing is not coming back. Due to
the nature of this tumor and it's extremely aggressive behavior, it will be
really good news when the scans come back clean (please God!!). Since Sean will
have to have his port accessed for the procedure we did not get labs done today,
so I can't give you his newest counts. We will be getting labs drawn tommorrow
along with everything else going on. After the MRI we have to drive down to UCLA
and drop off the film so Sean's Dr's can review the scan. After that we have an
appointment with a cardio-pulmanary Dr. for some more tests. WHEW!! I'm
tired already....anyhoo, Kelly or I will be updating tommorrow night to let you
all know how it went. The results from the scan won't be available for about a
week, so you will have to tune back in later to find those out. That's it for
now. if you could all find it in your hearts to say a brief prayer for Sean that
would be great. Many thanks for those prayers already said....I think they're
working....See you soon..love Rich
March 15 2003
Hello everyone, hope this update finds you all doing well.
Kelly went away to a women's retreat for our church so I thought I would give
you a quick update. It looks like the chemo is affecting Sean more and more each
cycle. His ANC is at 1008. Up from 938 on Monday. This is not the large gain we
were hoping for. Some of the important counts such as platelets and neutrophils
are actually down a little which would indicate that his body hasn't recovered
from the chemo yet. We get more labs on Tuesday which is also the day of his
MRI. Funny how nervous I get before these things. It's not like they make
anything appear you know. If something is in there the MRI will show it, yet I
am always so afraid right before. It's like I wish I could just freeze this
moment in time and stay right here where everything is fine and Sean is well.
But, as we all know, life moves on and drags us with it. Ok, thats about enough
of that. Despite his low counts, Sean is in good spirits and is actually quite
fiesty. He, Chris, and Brianna just finished watching Jackie Chan's movie "the
Tuxedo". Sean loves the Kung Fu moves and usually runs around the house
screetching and chopping at everything in sight after watching one. It's a lot
of fun to watch (which of course is why I rent them for him..;-). We didn't do
to much for Sean's birthday, at least not yet. When his counts are a little
better we will put something together. We are also hoping to take some cup cakes
to his class next week to celebrate with some of his school friends. We did
open a few presents on Sean's actual Birthday. I took a few pics if you are
interested. Go to the Photos
page to see
them. I will post more pictures when we have the actual party, so check back in
a few weeks for more. Thats about it for now. Thanks for checking back with us
again. Also, THANK YOU again to all of you who sent Sean a card or gift for
his birthday, you are all awesome. Thanks again.....love ..Rich
P.S. did any of you notice the "Happy Birthday" song I put
on the page....I will leave it up for a week or so, so don't worry it won't be
around forever. If you didn't hear it you probably have a slower dial up
connection. when you come to this page, give it a couple of minutes and it
should download.... bye again....Rich
March 12 2003
Ok folks, this is going to be a quick one. First of all,
today is Sean's Seventh Birthday. We wanted to say thanks to all of the
wonderful people who sent cards, e-cards, and gifts. You would have loved to see
the smile on Sean's face as he received each one. We aren't actually planning
anything for the day of his birthday, but he really wants to have a party with
his friends so we are leaning towards a local fun center called Mountasia. They
have go-karts, mini-golf, arcade etc... they also have an old time Ferrels Ice
cream parlor for the actual party. Anyways, thats probably going to be next week
some time (due to low blood counts), so look for pics then. I would tell
you what we got him, but he hasn't opened it yet and I don't want to give it
away! OK, on to business. Sean's transfusion went well last Friday and his
counts are already up close to 1000. He is feeling pretty good and we have close
to three weeks before our next cycle starts, so we are pretty happy right now.
This weekend was a little tense as I came down with the Flu and had to
quarantine myself in Brianna's room to keep Sean from catching it. It was very
boring and uncomfortable for me, but worth it since he seems fine right now. We
had an Echocardiogram (dont check my spelling please!) on Monday, and Sean's
heart seems to be doing just fine. We have a cardio-pulminary test and an MRI
coming up in the next week or so and another hearing test just before the next
cycle starts. I guess there really is NO REST FOR THE WEARY! ..But who's
complaining right? We just keep plugging away and try to be as thankful as we
can be for every moment with him. God will lead us through all of this and
we will be able to look back one day and say that we did this and it didn't
break us. And hopefully someone else will see that and be inspired and then they
will make it through and so on and so on. But, today of all days I really
am touched by how many of you have reached out to us and given us the support we
need. Without that support we really would have felt lost and alone, so thank
you all again for taking the time to write to Sean and send him little reminders
that the world has not forgotten him. That is all for now. So much for
keeping it short :-) Please check back soon as I plan to throw some
birthday pics up soon! ...thx...love, Rich
March 7 2002
We got Seans lab results yesterday afternoon and his body
had started to recover a little on it's own but not enough. His anc went
from 180 on Monday to 238 on Thursday, which is still WAY too low. His
platelet count was 30, up from 28 on Monday (normal range is 150-400.) His
hemoglobin was 7.1, down from 7.5 on Monday (normal range is 10.2 to 15.4) and
his hematocrit was 19.2, down from 20.4 on Monday (normal range is
32.1-40.9.) The Dr's look at a combination of all of the above to
determine the need for transfusion. So even though the anc went up
slightly, because of the other factors, a transfusion was still necessary.
The anc is his white blood cell count (0.7 as of Thursday, 3.9-13.7 being normal
range) multiplied by his neutrophils (34 on Thursday, 27-70 being normal) and
that gives you his anc (absolute neutrophil count) which tells us how likely he
to get an infection. As you may remember me telling you already anything
below 500 means he is at high risk for the threat of infection, 500-1000 being
"at risk" and anything over 1000 being a fairly low risk. So since he is
still at high risk, he has to wear a mask when going anywhere (which he hates)
and I've been told to be careful of produce, it has to be something that can be
scrubbed, no strawberries right now as an example because they can't be scrubbed
good enough to ensure there is no bacteria left on them. My sister who is
a nursing student just learned that a patient with an anc under 500 should be on
a low bacteria diet, meaning no undercooked meats, lettuce, like I mentioned
about the strawberries, no produce that can't be scrubbed. This is always
a scary time for us during his cycle, but Thank God it passes quickly once he
has a transfusion, and his anc goes up. He slept through the platelet
transfusion, and through half of the blood transfusion before he finally woke
up. He was pleased to see his friend DAndre in our room playing
Sonic. He hasn't seen DAndre since November. DAndre has tumors in
his lungs and it looks like the cancer also spread to other places in his body,
although I'm not sure of the exact locations. The chemo they are giving
him is working, but unfortunately it requires him to go to clinic every day and
get 8 hours worth of IV chemo, 5 days a week. It makes him very sick, and
his mom is very scared for him, so if you would remember DAndre in your prayers
also, it would mean a lot. Our neice, Lizze came with us today also and
she was glad when Sean got up, coloring with Auntie isn't as much fun as hanging
out with Sean. She loves spending time with him, and it makes him feel
like the "big kid" to show her around. He showed her where the gift shop
was and of course where they keep the candy. She also wanted to wear a
mask when she saw Sean had one on, which made him feel better, to not be the
only one wearing one. So we are now home, and will spend a relaxing
evening inside, maybe ordering a pizza and going to blockbuster, but that's
it. Sean is well rested though and ready to play. His lips are back
to the normal "pink" color, instead of a ghostly white. In the car this
morning he was so pale he was showing me all the veins in his arm. We are
done for while, Sean has his echocardiogram on Monday March 10th, then a brain
and spine MRI on the 18th. As usual we are getting a little nervous, but
we have faith in God, and of course are praying for the best results.
Thanks for checking in, God bless you all. Love, Kelly
March 5
2003
Hi everyone. I wanted to do a quick update and let
everyone know what's going on with Sean. We found out Monday that Seans anc was
only 180. We were told to keep him home and not let anyone near him.
That's pretty hard to do, so we just keep very very clean and pray for the
best. We were also told that his platelet count was extremely low and he
would most likely need a platelet transfusion on Friday also along with the
whole blood transfusion. Luckily I was able to get an appointment at
UCLA's blood and platelet center that afternoon to donate platelets and it was
quite an experience. It took 2 1/2 hours to donate them because they
filter the platelets out of the blood and keep them then return your blood to
you. For some reason, I can't really explain why, but when the blood is
returned it makes your lips tingle and it was very hard to get used to. I
was afraid to complain though because I didn't want them to stop the
procedure. Afterwards they said to take plenty of calcium the night
before, it seems to help. So now that that's over we just wait until tomorrow
when Blanche comes and see if his body is recovering on it's own or not.
It's a scary wait though, knowing your child needs a transfusion but there is no
room for him until Friday. If there were an emergency though they would
have to admit him into the hospital. By that I mean if he were to start
bleeding he would have to go straight to ER because he doesn't have enough
platelets for his blood to clot. Also with his counts so low he could get
an infection very easily and it would only take a matter of a couple of hours
for it to spread throughout his body, that is a condition called sepsis and it
is not a good thing. We also have to make sure he doesn't run or fall,
because then he would bruise and without enough platelets that's not a good
thing either. We were also told he should not brush his teeth, but wipe
them gently with a wash cloth because if his gums were to bleed even a little he
could get an infection. Last but not least we have to watch for his lips
or fingernails to turn a bluish color which means there is not enough oxygen in
his blood. This would also mean he needs to be admitted immediately for a
transfusion. The chemo kills good cells as well as bad, and one of those
good cells are hemoglobin, which carries the oxygen throughout the body.
So it's been a long week of taking Seans temperature (a sign of infection)
and reminding everyone over and over to keep washing their hands, but through it
all Sean is in good spirits. He is counting down the days until his
birthday and we are hoping to go to Disneyland in a few weeks if his counts get
high enough, but we have to wait and see on that one. He still has an
appetite and a decent amount of energy. We are all trying to decide what
to give up or take on for Lent. This is the first time we have really done
this and are actually looking forward to it. Rich is going to give up
computer games to read the Bible (I'm going on a diet too...Rich), and Chris is
giving up playstation. I am going to try and go out of my way to help
people, the way many people have done for us. I was considering helping
deliver meals to seniors in the mornings but I still have to be realistic as to
what I can take on, with so much going on around here. Tonight at church
the pastor put ash on my forehead in the shape of a cross and reminded us that
"from ashes we came, to ashes we will return." He then pointed out the
cross, and that Jesus is our salvation. It hit me pretty hard, especially
with everything going on with Sean, but at least I know that whatever the future
holds we have Jesus as our salvation. I know I normally don't get this
"deep" into our beliefs with you all, but it really touched me and I wanted to
share it. And to everyone who has done so much for us, you have inspired
me to want to do more for others, and hopefully it will go on and on.
Thank you all for your love and support and for all your prayers. Love,
Kelly
March 2
2003
Hi all, welcome back. I thought I would take a few minutes to update you all on
what's new with Sean and his treatments. Well, to be honest, not much is
new. Sean's ANC is still dropping and was somewhere around 700 last
Thursday. We expect it is closer to 200 or even lower right now, but won't know
for sure until tommorrow afternoon. He is definately in transfusion territory
and we have taken the liberty of scheduling a transfusion for this coming
Friday. We have learned that he does so much better after a transfusion that we
aren't even waiting for the Dr's to recommend one anymore, we just set it up and
wait for them to say "go". Sean has been eating really well compared to this
time last cycle. It is about 9:30PM, and about an hour ago Sean saw an
advertisement for stuffed crust pizza from Pizza Hut. He turned to us and said
"I want that!" and 35 minutes later we were all eating cheese pizza. I can't
figure out why I'm gaining weight...anyways, he is eating pretty well and
hopefully will put on a pound or two this time. Sean's birthday is coming up
soon, March 12th to be exact. If you get the chance please
e-mail Sean
and wish him a happy seventh! By the way, Sean is now officially half way
through his chemo cycles. He received his third Vincristine shot on Friday at a
local extension clinic for UCLA. We are looking forward to being done with this.
We have also received some additional information about Dr Burzynski in Texas.
His treatments are not available for general use to fight cancer
yet, but we're still looking at him as a possible secondary treatment should the
cancer return. His book "The Burzynski Breakthrough" is available online through
Yahoo and Amazon. If you want more info you can go to www.cancermed.com For those of you who don't know,
Dr. Burzynski saved a terminal patient who happens to be the daughter of a
fellow Sheriff's Deputy, Roman Moreno. We pray that it never comes to
it, but we want to be as ready as we can be just in case. That's about it. Don't
forget to e-mail Sean for his birthday and if you have any questions regarding
Sean's treatments or anything else, please feel free to shoot us a message and
we'll do what we can to get back to you. Thanks again for caring.....love
Rich
February 20
2003
Hi everyone. Just another quick update before the
weekend. Sean is doing pretty well right now. His ANC is at about 1400 which is
down quite a bit from 4200 last Sunday. This is normal though and nothing
to be concerned about. Immediately after I posted the last update we noticed
Sean was running a low fever, about 99.8 degrees. We watched it for several
hours and it eventually peeked at about 102.2, which of course freaked us out
and caused us to call the on-call Hemotology/Oncology Dr. for advice. The Dr.
told us we should take Sean to the emergency room which upset Sean quite a bit
since he had just got home from the hospital. We elected to wait and check the
temperature again after a half hour. It had dropped to about 101 degrees and we
decided we would postpone the emergency room for another half hour to an hour
and check again. Eventually it dropped back to 99.5 and since it was about 4am,
we decided to get some sleep. We woke ourselves every two hours to retake the
temp, but it never got above 100 degrees again. For those that don't know, a
temperature above 100.5 could indicate an infection in Sean's shunt,
port-a-cath, or blood. Because of this possibility, any fever is taken very
seriously. We lost a lot of sleep that night, but were just happy it turned out
okay! Thats the quick rundown on recent events with us. This weekend we have
plans to go to a cabin in Frazer Park. The cabin belongs to Sean's pediatrician,
Dr. Kim, who was the Dr. who sent us in for the first scan which led to finding
the tumor. He is a truly caring man and has offered to share his cabin in the
mountains with us so we can enjoy some time together away from things. We will
leave Sunday after church and stay till Monday afternoon. If it goes well, Dr
Kim has said we are welcome to use the cabin as often as we like. Thank you Dr.
Kim, we are totally looking forward to going. That's just about it. We saw
Daredevil tonight and Sean really liked it. I made sure to point out how the
little boy in the movie had a disability and was still able to accomplish his
goals. I think Sean understood where I was coming from. Also, Sean had an eye
exam yesterday and he is so excited because he gets to wear glasses now. He is a
little near sighted (just like mom, dad, and brother) but the Dr's don't think
it has anything to do with the chemo. Well, I need some sleep so I will go
now. Thanks again for taking time to check the page. God bless all of you . Love
Rich and Kelly.
February 15 2003
Hello everyone...we are back from the hospital and doing
well! Sean went in for his 4th cycle on Friday 02-14-03 at UCLA. Sean is such a
trooper! He was scared Friday and was very upset that he had to leave home
"AGAIN", but the whole time he was talking and crying, he was walking to the
car. He got himself in and buckled up, all the time talking about how much he
hated it. Kelly and I were in tears ..of course. It's so hard to watch our baby
carry this burden. But despite how we felt, we did leave and made it to the
hospital in one piece. Right off the bat things went well... for once! We were
admitted right away and made it up to our room after only a 15 minute wait. We
also got our own room, thats right, as in all to ourselves. This is a first for
us and it was really nice to be able to spread out. Dr. Moore saw Sean shortly
after our arrival and the orders were placed for the chemo. We started the chemo
at about 11PM and after a short while, Sean fell asleep. I stayed with him for
the night while Kelly went home. During the night, Sean woke up every hour or so
and went to the bathroom. He is kept very hydrated to help flush the chemo out
of him as fast as possible. Sean was feeling a little ill when he woke up , but
over all was in good spirits. We played playstation together for a little while,
before the nauseau medications got the better of him and he fell asleep. We
spent most of the morning and early afternoon like this until Kelly showed up to
take us home.. We are home now and Sean is playing with Kelly's hair as I type
this. His tummy is bothering him a little, but he is hanging in there. It
was nice to get home, and Sean also got a chance to visit with Grandma
Joy tonight before she left for New Zealand. Last weekend we attended an event
for the Michael Hoefflin Foundation for Children's Cancer at a local bowling
alley. We had such a great time that we are already making plans for a return
trip as a family. I took a few pictures so if you have a minute go to the
photo page and check it
out. Also, Sean was able to make it to his classes Valentines day party and all
the kids were sooooo happy to see him. It is always scary to take him back to
see everyone. I keep thinking they will have forgotten him, but I am happy to
say they have not and he fit right in like he had never left. He had a greaqt
time at his party and when we left, he jumped in the air and said "THIS WAS THE
BEST DAY EVER!!". Sorry, no pics of that.... That's all for now. Thanks
again for checking in. More will follow in a few days.......thx..love
Rich.
We are spoiling Chance...after all, He's a part of our
family
February 7 2003
Hello again, thanks for checking back in ..Sean is doing
well right now although he is still experiencing some nausea in the
morning. We give him a glass of milk and it seems to go away. We are planning on
discussing this with the doctor next week as it has us a little concerned.
Sean's ANC is at about 4000!! which of course is great. He was only at about
2500 going into the last chemo cycle, so thats a good thing. Chance is still
with us and seems to be doing a little better as you can see by the photo above,
We have been spoiling him pretty bad lately, but hey, he's worth it. We had
a really good time at the beach and I took lots of photos....unfortunately for
reasons as yet unknown the photos dissapeared from the memory card. The disk
still reads full, but doesn't show any photos or anything else. So, as you can
imagine I have been a little upset over this as every memory is SO
important to us and I made sure I took a lot of pics. I am, working on
recovering the photos but I'm not holding out much hope. Other than that things
are going as good as we can hope for. We really did have a good time camping and
we have decided that when money permits (read:when Rich gets a job) we are going
to purchase a camping trailer. We really liked the quality time we spent
together, without TV, video games etc..Oh yeah...Sean had his hearing test today
and he is doing GREAT! There is no evidence of loss of hearing. Please keep
praying for this to continue. Also we got some information from the Burzynski
clinic in Houston TX. Dr. Burzynski was recommended to us by Roman Moreno who's
daughter was treated for a brain stem tumor by Dr. burzynski. We want to get all
of our ducks in a row just in case this monster rears it's ugly head again. It
is our intention to treat any relapse at Dr. burzynski's clinic although we pray
every day that it won't be neccessary. We will keep you all informed about what
we find out. Until then, thanks agin for checking back in with us. We love you
all....Thx, Rich