May 26, 2003
Sean and his new Kitty "Nikko", chillin
on the couch..
Hi everyone, we hope you are all enjoying a nice long weekend. We sure are. Rich and I were remembering where we were last Memorial Day and it was waiting for Sean to return from his surgery to have a drainage shunt and port-a-cath put in. Not a pleasant memory, it was a long day but here we are a year later, Thank God. Sean had a pretty good week last week. His counts started to drop but thankfully I thought ahead and scheduled a transfusion for last Thursday, about 3 weeks ago. So when he saw Dr. Feig on Wednesday, he said go ahead and keep the appointment, it would be a good boost for him. Dr. Feig also mentioned what good coordination Sean has. He high-fived him and Sean gave him a pretty good smack. Friday was his last vincristine shot for this cycle. He now has almost 4 weeks until his next cycle #7 on June 20th. He does have an mri scheduled for June 10th so we would like to ask you all to pray about that. We are going to try and have Blanche come with us again and that is a comfort to Sean. This will be his first mri without his daddy there. He is getting used to Rich being gone during the day, but it's been a little hard for him. They have gotten really close. Other than that, things have been really normal, Seans anc was 1800 after the transfusion so we were able to go to the park and fly a remote control airplane, go to church, normal stuff that we can't take for granted anymore. Thats all the news I can think of for now, but once again thanks for all the prayers and if you would remember to pray for a girl named Britteny too, I would appreciate it. She was cancer free but her brain tumor returned recently and she is now fighting it again. I can only too easily imagine the horror they must be going through. Thank you for everything. Love, Kelly
May 17 2003
Hello all, happy one year anniversary. Today is one year
after the surgery to remove Sean's tumor. I said "Happy Anniversary" to Kelly
this morning and she cringed, but I pointed out that we could be having an
entirely different sort of anniversary today if not for the brilliant work of
the doctors a year ago, so we are trying to keep it in perspective. I am writing
to you from Vista California where Kelly's parents have there retirement home.
We decided to take a trip down here for the weekend for "Fish Tacos" which my
in-laws are famous for. Sean is feeling good and is looking forward to seeing
some of his family today. We have all eight puppies with us plus two new kittens
(only one will be ours) so we've got a full house here. For those that don't
already know I was recently offered a job at GMAC-RFC. They are a subsidiary of
General Motors Acceptance Corp. and are located about 25minutes away in Burbank.
I start on Monday (05-19-03) so wish me luck. Kelly will be home with Sean at
least till he goes back to school. I reflect back on this last year and I am
really grateful that I had the ability to be home with Sean everyday. I truly
believe it has helped him through this to have both his parents near him at all
times. We have met several children whose parent(s) has had to work or just
isn't around and the child had been left to fend for themselves. In almost every
one of these cases, the child has not done very well. As I said, I feel lucky to
have had the time to be home, but all good things must end (at least in this
world) and now it's back to the grind for me. Some of you may get an e-mail from
us sometime soon regarding the American Cancer Society's Relay for Life. One of
the events coordinators has a daughter in Sean's class, and wanted to put
together a team for Sean in the upcoming event. I will post more info and a link
to the web site when I get the chance. Basically it is being held all over the
country, with a relay scheduled for the weekend of June 28-29 2003 in Santa
Clarita (where we live). It is a relay walk for 24 hours, starting at 9:00am on
Sat and ending at 9:00am on Sun. Participants walk around a track (ours is at
College of the Canyons) for 24 hrs as a show of support for family and friends
with cancer. There are numerous other side events and booths. You can rent a
space in the center field for a tent to camp in or a booth. Also "luminary bags"
(paper bags with candles) can be purchased and lit in honor of a loved one.
Sean's entire 1st grade class is going to form a team and they will relay for
Sean. They are also purchasing and decorating bags which will line the field as
they walk. We are a little overwhelmed by the amount of activity on Sean's
behalf, but everyone really wants to do it, so hey what the heck! I have been
asked to speak at the Luminary cerimony on Saturday evening about halfway
through the relay. I will give a brief account of our journey through this
nightmare and give some personal insights into childhood cancers. Look for more
info on this relay soon. Ok, I think this update has been long enough. Please
continue to pray for Sean. We are so pleased with his progress and are so
thankful for all our friends and family. Happy one year anniversary....heres to
many many more!!......see you soon...love Rich
May 8 2003
Everyone, this is Linda...She is Sean's
AWESOME Audiologist!!
Greetings everyone, I know it is hard to believe, but I am
updating the page less than one week after the last update......don't get used
to it!!...;-).. So, where to start. We have been gearing up for Sean's next
chemo session which was set to start tommorrow (Friday, 05-09-03). Notice I said
"was", more on that in a minute. Sean had his regular hearing exam on Wednesday
with Linda. Linda is Sean's Audiologist. She is super sweet to us, and Sean
really likes her. Sean's hearing exams are one of the only tests he doesn't mind
since it isn't invasive and usually ends with at least one piece of candy
changing hands (if you know what I mean.) Sean's hearing dropped again in the
extreme high frequency range. He is still ok in the speech ranges, but may not
be able to hear things like whistles and crickets. This is a common side
effect of the Cisplatin chemo. We are keeping an eye on his progress in this
area and will of course keep you all posted about future test results. We had
some time earlier this week and decided to head to Disneyland for an
overnighter. We got a room at the Disneyland Hotel on Monday and Tuesday
nights. We had a great time exploring the "resort" (thats what they call it
now) and checking out the Downtown Disney area. We spent all day Tuesday at the
park and had a really good time. It was nice to have a room close by as we all
got a little tired of walking around the park, and ended up in the pool at
the hotel for a couple hours mid-day Tuesday. I took a couple pictures, but
believe it or not, we were too busy having fun and I forgot to
take more. Since I only have a couple, I will post one on each of
my next updates until you have seen them all. Ok....about the chemo
tommorrow. We got a call from the Oncologists at UCLA today and they were very
concerned with Sean's Kidney functions. Recent blood test have revealed that
Sean's Kidney's are only functioning at about 50% right now. This is another
very common side effect of the Cisplatin. Sean's protocol specifically states
that should his kidney functions drop below a certain level, they will suspend
the use of Cisplatin pending future kidney tests. In short, they are going to
skip his Ciscplatin this cycle and only give him the Vincristine and CCNU. Since
both of these chemo's can be given out-patient, we don't have to stay in the
hospital tommorrow night. We will go to clinic tommorrow at UCLA and will be
home by the afternoon. Kelly and I have mixed feelings about the pause in
treatment. We are happy because we have been told by several doctors (ours
included) and have read it in several other places on the internet that there is
no proof that chemo works on Medulloblastoma tumors. The protocol Sean is
on has so far done well for treating Medullo's, but most, if not all, of that is
attributed to new radiation techniques. So, skipping the Cisplatin this cycle
seems ok. On the other hand, as one of our doctor's also said, you don't want to
look back and wonder later, if this thing returns, if it could have been
prevented by taking the chemo. So...there you have it. Take the chemo and risk
our son's kidneys and hearing, or not take it and risk a return of the tumor.
Luckily the choice has been taken away from us for now. I will let you all know
what develops out of this. For those who are wondering, yes it is fairly common
for these issues to come up towards the end of treatment, so we are not the only
ones. So, that is it in a nut shell. I want to thank all of you who have been
praying for our friend Bethany. She is a 10 year old Medullo patient who
was just getting ready to start her chemo cycles when they found what they
thought were tumor cells in her spine. After several opinions from doctors
around the country, it has been determined that the MRI was originally
"overread" and that there is no recurrence. So, praise God and thanks
to all of you who said a prayer for Beth and her family. That is all for
now. Sean is excited about not staying at the hospital tommorrow. Oh
yeah...before I forget, Sean's ANC today was 1575. Because he is not taking the
Cisplatin, his counts shouldn't drop so dramatically this cycle. Hopefully this
will turn out to be more good news for him as his tiny body is having more and
more trouble getting the counts back up after each cycle. Ok, I gotta run now
kids. Thanks again for checking back in with us. We love you all......Love
Rich
May 2 2003
A little yoga to relax the mind and body!!!!
Wow....can you believe how long it's been since our last
update. All I can say is that we've been pretty busy lately. Sean's counts have
been climbing steadily since the transfusion and his ANC as of yesterday evening
was at 1885. That's pretty good if you consider he was at 100 or so 2 weeks ago.
We have been trying to do fun stuff the last couple of days while his counts are
good enough to get out. We are hoping to go to Disneyland next week some time
before his next chemo starts. For now we have just been going out to eat and to
the movie theatres. We saw X-men 2 and Anger Management today. We are proud
to announce the birth of 8 new members of the family last week. That's right,
our dog Brandy,finally gave birth to her litter. She had 9 pups, but we lost one
a day or two later. Sean has been getting a real kick out of them and we are
encouraging him to play with them as much as he wants. We feel it is very
soothing for him...and God knows he needs to have some relaxing time once
in a while.We took some pictures of the puppies. You can find them by going
to the photos page and clicking on the link. I also
included some pictures of Sean doing yoga with his best buddy Conner's mom
Karen. Karen goes to Sean's school once a week to work with the first graders.
She thought it might be a nice thing to come by the house and teach a little
yoga to Sean. Chris and I went away last weekend for the Trout "opener" at June
Lake near Mammoth. That is one of the reasons this update is overdue. We had a
great time and I am looking forward to the day I can take Sean with us. I'm
racking my brain for anything else to tell you. I know there is more, but I am
very tired and can't think of anything else right now. I will put another update
up in a day or three. Thanks again for checking back with us. As always, we
thank God for all of you. Thank you for your prayers and kind thoughts. We love
you all.....love Rich
April 19 2003
Hello everyone, hope this update finds you all doing well.
Good news, Sean came home from the hospital yesterday afternoon and is doing
just fine right now. His counts are still ridiculously low, but we were allowed
to leave anyway. The doctor told us that normally he wouldn't advise letting us
leave, but he said he knew how well we take care of Sean and felt we would be
fine if we just continued our normal precautions around the house. We of course
already knew we would and a couple of hours later we were walking out the door.
Sean is doing well right now and has a surprising amount of energy for someone
with such low blood counts. We are hopeful that by Monday (his next lab day) his
counts will rise at least a little higher. Kelly gave platelets on Thursday
in anticipation of Sean needing another transfusion this next week. We are still
holding out hope that he can get by without another one, but we are plannig for
it anyway. Tommorrow is Easter and we are looking forward to spending the day
together and being thankful for Jesus and everything he has done for us. We will
of course continue to pray for Sean to be healed and for our lives to return to
a somewhat normal state. That's about all for now. I know it's kinda short but
I'm beat and things are OK for now, so I will do a more indepth update and add
some photos of Easter and other stuff in a day or two. Thanks for checking back
with us. God bless you all and have a wonderful Easter....love Rich
April 17, 2002
Hi, I wanted to give everyone a quick update on Sean. He is still in the hospital. He wasn't allowed to go home on Tuesday as planned because his anc was only 100 and he had a low grade fever. They took blood cultures to see if there was an infection, but it takes 3 days to get the results. If his anc wasn't so low it wouldn't be a big deal to go home, but since it was 100 he needed to stay in the hospital on iv antibiotics just in case. The cultures came back negative for infection today, which is good but his anc only went up to 117. It is climbing really really slowly so before he can come home Dr. Moore wants him to be off antibiotics for 24 hours with no fever before he will release him. So he is now off the antibiotics and we are praying for no fever so he can come home tomorrow. They also anticipate he may need another platelet transfusion this weekend or early next week, so we may not be home long before he has to go back, but it's better than nothing. His oncology team will also be discussing whether or not to lower his next chemo dose because it's taking so long for his body to recover. That's about it for now, his sprits are still good, he's getting homesick for Chris and Brianna, his cartoon channels, Gamecube etc. but were making the best of it. Hopefully we'll be updating tomorrow night saying he's home. Love, Kelly
p.s. Thanks to everyone for praying for Bethany, it looks like there was a second opinion done at St Judes Childrens Hospital and they say it is not a recurrence, so Thank God for that.
Hi, I wanted to give everyone a quick update on Sean. He is still in the hospital. He wasn't allowed to go home on Tuesday as planned because his anc was only 100 and he had a low grade fever. They took blood cultures to see if there was an infection, but it takes 3 days to get the results. If his anc wasn't so low it wouldn't be a big deal to go home, but since it was 100 he needed to stay in the hospital on iv antibiotics just in case. The cultures came back negative for infection today, which is good but his anc only went up to 117. It is climbing really really slowly so before he can come home Dr. Moore wants him to be off antibiotics for 24 hours with no fever before he will release him. So he is now off the antibiotics and we are praying for no fever so he can come home tomorrow. They also anticipate he may need another platelet transfusion this weekend or early next week, so we may not be home long before he has to go back, but it's better than nothing. His oncology team will also be discussing whether or not to lower his next chemo dose because it's taking so long for his body to recover. That's about it for now, his sprits are still good, he's getting homesick for Chris and Brianna, his cartoon channels, Gamecube etc. but were making the best of it. Hopefully we'll be updating tomorrow night saying he's home. Love, Kelly
p.s. Thanks to everyone for praying for Bethany, it looks like there was a second opinion done at St Judes Childrens Hospital and they say it is not a recurrence, so Thank God for that.
April 14, 2003
It's about 1 am on Monday night so I'm going to try and
keep this short, if that's possible. Sean was admitted to UCLA today for a
blood and platelet transfusion and because of a fever and a very low anc they
won't discharge him just yet. His counts dropped sooner than usual this
time, his outpatient transfusion was scheduled for this Wednesday, but we knew
last Friday he wouldn't make it that long. His anc was 975 on Friday which
is ok but his platelets, hemoglobin and hematocrit were all low enough to
transfuse. But it was Friday, too late to do anything, and since there
were no symptoms we were to be very very careful over the weekend and see what
Mondays labs were. We were warned to watch for bleeding, since he has
almost no platelets, any bleeding is very dangerous. We didn't realize
until Blanche came this morning to draw blood that very dark urine, almost brown
could mean that he is losing blood through his urine due to a low platelet
count. That was considered a symptom so we went for what was supposed to
be a day in the hosptital (there was no room in the outpatient clinic).
Todays labs were so low that the lab called Blanche and asked her to draw more
blood, they thought for sure there was a mistake and that it couldn't be
right. Of course it was, his anc is 120, hemoglobin is 4.7 (UCLA
transfuses at 7 and normal is 10-15), hematocrit is 12.7 (UCLA transfuses at 20
and normal is 32-40), platelets were 17 (they transfuse at 20 unless there are
symptoms and normal is 150-400). Sean was so low he needed 2 units of
blood (he normally only gets 1) plus platelets. Dr. Moore also recommended
I donate more platelets towards the end of this week and schedule an outpatient
appointment for next week. The effects of chemo are cumulative and each
time his body will have more trouble recovering. Thank God only 3 more
cycles to go. Please continue to pray for Sean, that his fever goes away
on it's own and his anc goes up so he can come home. Needless to say he
was disappointed to have to stay, but I guess it's better than coming home only
to have to go back in the middle of the night. With an anc this low, if he
were to have an infection it could get very bad, very fast. Although
personally I feel he's exposed to more germs in the hospital than at home, but
what can I say, all I can do is pray and be the nag that reminds everyone to
wash their hands. I'm off to bed, so I can get Chris and Brianna off to
school and head back to hopefully pick up Sean and Rich, or at the very least
trade off so Rich can come home, he has an mri of his back tomorrow. He's
had numbness and weaknesss in his leg possibly indicating another herneated
disk. (Please don't look too close at my spelling, it's late, I'll have
Rich fix it later) Love you all, Kelly
p.s. I would also like to ask you all to pray for a 10 year
old girl named Bethany who was diagnosed with a medulloblastoma also, she just
finished radiation and her spinal mri showed that there it has spread to her
spine. She is now in the high-risk category and starting high dose chemo
tomorrow. Her family is understandably devastated, so please remember them
in your prayers.
April 7 2003
Hello everyone, we're back....finally. Things are going
fine in case you were worried about the long wait for an update. Chemo went well
last weekend and we came home on Saturday afternoon. At that time we still
hadn't heard back from UCLA about the MRI results. We were pretty upset, but
like always had to wait anyways. We are still seriously considering transfering
Sean to Children's Hospital L.A. We have heard from friends that they rarely
wait more than a day for their MRI results.....in contrast to our two week +
wait times. We finally did hear back from UCLA on Tues. and they said everything
was fine. Thank God we had the preliminary report from the Imaging Center Doctor
or we would have been basket cases for two weeks!! We are getting close to the
end of the chemo treatments so the chance of us changing hospitals is slim, but
we are not set against it yet.. Anyways, Sean is very pale and his counts
dropped really quickly this time. We have already set up an appointment for a
transfusion, but may need to move the date up a bit as we aren't sure we can
wait till the appointment (04-16-03). Sean got his labs done today so we
should have the results soon. His counts as of last Thursday were 1250 and we
are guessing he will be down around 400 by today. More importantly he is
very pale and has no color to his lips which might indicate low red blood cell
counts. His platelet counts have also fallen quite a bit. All in all I
would say the chemo is having a more apparent affect on Sean and it is
getting harder and harder for his tired little body to recover. I guess that's
the point, but seeing him go through this is killing me. We took a trip down to
Vista for an overnighter at Grandma Joy's house yesterday. We
wanted to stay longer, but we were afraid of Sean catching something so far from
home so we kept it short. We had a good time and are planning a camping trip for
next month when Sean's counts are good. Thats about all I have for you all right
now. Thank you all for your prayers and thoughts, we couldn't get through this
without them.....thx..love Rich
P.S....We just got the labs in and surprisingly Sean's ANC
is at 1170. His Red Blood counts are a low and his Hematocrit and Hemoglobin are
also near transfusion territory, but all in all he is doing a little better than
we expected. I'll keep you all posted (of course!) when the next labs come
out...thx again...Rich