Saturday, October 19th, 2002
(DF) My Mom and I just finished watching Footloose. Since so many people
called (which is a very good thing), and we had to prepare and eat dinner, we
watched it spanning a time period of about 5 hours. I'm glad I watched it
though. Before I had resisted seeing it because I had only seen the
beginning when the stupid small town teens play chicken with tractors. But
it was a really cool movie and I can tell why it's considered a classic. And
now the episode of Will & Grace with Kevin Bacon makes a lot more sense to
me.
HEY! Can you list the four degrees of separation between Britney Spears and
Kevin Bacon?
(TF) Footloose was also filmed in American Fork and Lehi, Utah. Jim grew up
in American Fork and Daniel and I recognized lots of the scenery from family
trips. (And we think Jim dances just like the character Willard, in the
movie.) Daniel and I danced in the living room of Fisher House as the
credits rolled...we also danced earlier in the Fisher House parking lot to
Tom Waits turned up on the car CD player...yes, we rock. (Plus no one was
around to actually see us!)
(DF) Other than watch Footloose, we didn't really do much of anything. No,
that's not true. My Mom cleaned the bathroom and cut out some notes to send
out to people, and did a bunch of laundry. We also ate lunch and played a
lot of Scrabble, but the kind of Scrabble without the board. It's a lot
faster paced and makes us feel smarter rather than dumber, which normal
Scrabble usually makes me feel.
(TF) I also made dinner with enough left over for tomorrow, and the next day
and the next...
(DF) In 3 or so hours my dad is going to be arriving at Fisher House. He's
coming out for my upcoming surgeries, and I'm really excited to be able to
spend a day (tomorrow) with him. I think we're for sure going to go get some
apple cider donuts and perhaps go to the Empire State museum.
One big bummer about this weekend is the fact that we can no longer access my
update page. That means that *sadly* my Mom and I can't view the guest book.
Here's what happened. Someone at the Fisher House was logging on to porn
sites, and the email inbox started filling up with lascivious junk mail.
Tawdry, raunchy. So the manager here must have set up the AOL parental
controls. And for some reason, all of Jeff Laun's sites are blocked, which
makes no sense whatsoever. There is nothing at all inappropriate about them.
We've sent a request to AOL to allow the site to be filtered through the
parental controls, but haven't heard back from them yet. Here's hoping that
this mistake can get cleared up soon.
Well, I'm going to go shower so that I'm not all smelly for my dad when he
arrives. Talk to y'all hopefully soon. ~ Daniel
(TF) Daniel is also going to put on his Angels cap and I will don my red
pajama T-shirt to cheer the Angels in the first game of the World Series.
It's the best eleven out of thirteen games, right? (I'm kidding Michael)
And finally, not only is Daniel excited to see his Dad...so am I! Good night
to all. Love, Toni
Sunday night, October 20, 2002 8:30 pm
(TF) Today started very early...about ten minutes after midnight when Jim
arrived and sneaked in to give Daniel a goodnight kiss. Lots of excitement!
The rest of the night was pretty busy too...Daniel called out in his sleep,
"I'm shaking!", so I went to see what was the matter. He said, "I'm shaking
because I can't keep my balance." Quickly putting together clues (he was
lying down, it was the middle of the night), I asked if he was dreaming and
he said, "yes, of course." (You dummy was implied but not spoken). I
tripped back to bed and a few minutes later it seemed as though Jim's
anti-snoring machine kicked into high gear. I finally left the guys to fend
for themselves and curled up on the couch in the other room. In the end, we
all got a good night's sleep.
Daniel was the first up at 10:00 a.m. and we decided to wake Jim since we had
so much fun in store for him. We made a call to Betsy to begin the day.
Getting her message machine we left a less than harmonious rendition of
"Happy Birthday" as a wake-up call.
Our first stop was Starbuck's (this does not surprise anyone, I'm sure), and
then on to the apple stand for hot cider and doughnuts. Jim also marveled at
the autumn colors, deep reds, bright yellows and vibrant scarlets. It was a
beautiful, clear day...deep blue sky and pillowy (is that a
word?[{DF}cumulus]) clouds.
We had a quick lunch and set off for Empire Plaza, the home of the state
capitol, state office buildings, state museum, reflecting pools and The Egg
(a performing arts center shaped like it's name). We spent a couple of hours
in the museum taking in the extensive exhibits...we were especially touched
by the Trade Center display. Daniel's Uncle Tod would have loved the visit,
since he is the director of the Haggin Museum in Stockton, (but Jim reminded
us it would have taken much longer because Tod actually reads ALL the signs).
Daniel was willing to navigate some pretty daunting stairs to see the
reflecting pools and it was well worth it. There are two very large pools
surrounded with sculptures, picnic tables, tree-lined walkways and anchored
by two imposing government buildings. This will certainly be one of our
highlights when we look back on our time in Albany.
Back at Fisher House Daniel went down for a nap, while Jim and I watched the
end of a couple of football games waiting for the 2nd game of the World
Series to begin...we do expect a WIN today. When Daniel woke up we
introduced Jim to that fast-paced, intellectually challenging game, "Pass the
Pigs." It is oddly addicting.
As I write this, Jim and Daniel are continuing to banter as they have all
day (it's either bantering or babbling, depending on the mood I'm in), while
preparing quesadillas in the kitchen. Mindy sent Daniel a package of Taco
Lita sauce that cannot be ignored. It will also probably be his last meal
before the surgery tomorrow morning. Nothing to eat or drink after midnight
and the time is rapidly approaching.
We ask for your prayers, positive thoughts, and support for Daniel and all of
us tomorrow. We have great faith in the doctors, Daniel and Albany Med but
your support is also very meaningful. We wish you all sweet dreams...Love,
Toni, Daniel and Jim
Monday October 21 2:00pm The surgery did not start until 11:30 -- and he will probably be in surgery until 5 or 6. The Plastic surgeon came out and his part was completed... Now the bone plate part is still being done... He will also go to recovery for a couple of hours before Jim and Toni can see him... Toni will call my mom on her cell phone as soon as they hear anything
Monday October 21 3:00pm PST The surgery is over and it went well. At 9:30, they checked in to the Albany Medical Center. At 10:00 am, Jim and Toni were asked to go to the waiting room. The surgery started after 11:30 because they had a late start. At 4:00pm, the plastic surgeon, Dr. King, came out. He said they did use bone from the bone plate to repair the bridge of his nose and above his left eye. It's still uneven so he'll need plastic surgery back here in L.A. At 5:15 pm, Dr. Emrich came out to talk to Jim and Toni. He said that they didn't repair the scar on his forehead. (This can be done later.) The incision was on top of his head from ear to ear. There was a small amount of brain fluid leaking in the dura which they fixed for the short term. They will need to watch that long term. There was significant loss of blood but they didn't feel like they needed to do a transfusion but Daniel may require one later. His blood pressure was stable all through surgery...that's good. The doctor said it went well. Daniel's in recovery probably another two hours. He'll probably be in the hospital through Friday.
Monday, October 21st, Monday Night Update from Jim...
Hey everybody, it's Jim tonight. Toni is spending the night at the hospital
with Daniel. I just spent nearly an hour trying to write a report that would
reach Toni and Daniel's standards and I really think I was getting there when
the dang computer froze. I was angry when it happened but it quickly turned
to depression. I'm still going to do the report, but I'm going for a lower
quality standard this time and focusing on speed.
First though, Anne Marie Snide is one of the wonderful AMC nurses and has
become a family friend. Well, Anne Marie needs your prayers for her niece's
child tonight. The baby was supposed to have a liver transplant today in New
York City and Anne Marie is there with the family. Please include them in
your prayers.
Back to Daniel: No one slept well last night. We were in our own private
thoughts that even that Krall person couldn't reach. I woke up early which
never happens. Daniel couldn't eat anything but still managed to throw up
before we left for the hospital. He told us that he threw up again while
they were getting him ready for the operation. Coming back to Albany Medical
after seven weeks away filled me with dread and watching Daniel being
wheeled away didn't do anything to make it easier.
Toni and I settled in to wait with dozens of other families with loved ones
in surgery. Fun, fun, fun. I had sympathy for everyone but the LOUD ones.
Daniel's surgery was longer than most and by the time Dr. Emrich came out at
5:15pm, the place was pretty much cleared out. After the surgery, Daniel
went to recovery for a couple of hours so we didn't see him until around
7:30pm.
I am getting ahead of myself. Dr. King, the plastic surgeon, explained how he
split the skull plate to make enough bone to cover the open spaces.
Fortunately, he knows what he's doing because it blew right by us. We are in
awe of the doctors' skill and it seems they like it that way. Because of the shape of
the bone, Dr. King said it didn't have quite the same shape as the original pieces and
further reconstructive surgery would be required. Sometime in the next year, Daniel will
have to have major reconstructive surgery... but we will deal with that when the time comes.
We are just grateful to have this one over and successful. Mindy Sherman did a good job of
covering the facts and we appreciate her for that. (Mindy -- why aren't you
in school?)
Daniel went from recovery to the Pediatric Intensive Care Unit (PICU). Toni
tried to get him in SICU but they didn't have any available beds. The PICU
is a deluxe facility with good staff. I believe it is easier to raise funds
to take care of cute little kids and it shows. We still wish Daniel was in
SICU but he will probably be transferred to a neurology room tomorrow.
Because of the things Dr. King told us, we didn't know what to expect when we
saw the boy. I wish you all could have been there when they wheeled him by
us. Daniel looked like Daniel! There was enough swelling from the surgery
that his face was normal-sized and with the bone plate back in his face was
the right shape. He was beautiful. (I'm sure he would describe it
differently, but beautiful is what it was.) Daniel wanted a mirror to see
how he looked and the nurse found one right away. His conclusion was that he
looks "weird" but he was referring to the shaved head. I explained that he
looked like Yul Brynner, but he didn't know who Yul was. I didn't have the
energy to explain, so like any good parent, I assured him that he looked
fine.
Daniel received morphine for pain so he was a little goofy when the brought
him up to PICU. As he came off the elevator, he was singing "Help" by the
Beatles. Because his voice was froggy from the respirator tube, I thought he
was really saying, "help, I need somebody" and was concerned. Toni, being
one step ahead as usual, assure me he was singing. Daniel was in a great, if
drug induced, mood. All of his vital signs were good and we were relieved.
Cheree and Giovanna (sp) dropped by after their shifts in the SICU. Daniel
opened his eyes long enough to say hello and then pass out hugs. He seemed
semi-aware of what was going on but kept his eyes closed. Toni decided to
spend the night so I came back to Fisher House to make the report. I'm sure
I missed something so Toni will have to fill in the blanks tomorrow. By the
way, Daniel asked me to tell everyone that he loves you all. I believe he
does, too. Love to all and have a good night. Jim
Jim Fox
jfox215@hotmail.com
Tuesday, October 22nd, 2002
Toni is at the hospital again tonight with Daniel. If she reads my updates
she may want to trade shifts.
Well, today was a pain management day. The day was divided into four hour
blocks because the medication came every four hours. Forty-five minutes
before the medication and thirty minutes after the medication were tough
times. It never ceases to amaze me what pain does to men. When he was
hurting the worst, Daniel would get down on himself for the accident and the
lost months of his life. He wanted the bone plate out, to get out of the
hospital, skip the next operation and get to SoCal. When the pain subsided,
he was back to his reasonable self. Daniel intellectually understands
everything going on and the implication for him and the family, but emotions
sometimes over-ride reality. I guess that makes him pretty normal (at least
in our family).
The swelling in Daniel's head was up when I arrive around 8:00am and
continued to increase until late afternoon. The swelling is nowhere near
what it was in the early months, but he wasn't awake for any of that. He was
(and is) quite distressed at the swelling. He said his face felt huge so I
located a mirror to show him that it wasn't too bad. Big Mistake. Not too
bad for me was horrible for him so there won't be any more mirrors. Daniel
wanted me to call Toni and tell her that she couldn't come back to the
hospital because he didn't want her to see hime this way. The boy doesn't
understand mothers as well as I thought he did. The nurses say that the
swelling may increase a little more and will discolor. We won't be taking
pictures so everyone will have to use their imagination.
Daniel was moved out of PICU this afternoon and into the Pediatrics ward. He
has a roommate named Ben who is mid-teens. I assured Daniel that everyday
would be better than today until they boot us out later this week. Toni is
going to talk to Dr. Tamayo about more agressive pain management for the
aorta surgery. Take care and we will be in touch tomorrow. GO ANGELS, Jim
Wednesday night, October 23, 2002
Toni is spending the night at Albany Medical again but this should be the
last one for a while. Dr. Emrich stopped by this afternoon to see Daniel and
deemed him ready for release. Daniel & parents are excited to get home to
Fisher House. Jerry Jensen and the other good people at Fisher House have
made it seem like home. Dorothy, one of the volunteers, made banana pudding
and brownies for Daniel today. Since I helped him eat them, I can assure you
that they were wonderful.
Today was another pain management day. The pain was somewhat reduced but
still intense at times. Medications helped and we are learning to ask
earlier in the pain cycle so we can avoid peaks. The swelling has gone down
somewhat and Daniel is able to face himself in the mirror again. Like all
kids, he is a much harsher critic than his parents, but even he admits that
it is better. He hasn't started to color yet so we are still waiting to see
the final results.
Dr. Perez-Tamayo stopped by today and the aorta operation is still on
schedule for next Wednesday. Several of the SICU staff stopped by to see
Daniel and Toni. Toni wasn't there so she went down to SICU later to see the
ladies. Edith Lett also stopped by to see Toni and Daniel. All in all it
was a good day. (By the way, the liver transplant went well for Anne Marie's
grand-nephew. Please keep them in your prayers.) We expect Thursday to be a
better day because we will have Daniel home and the Angels will be 3 and 1.
Love to all, Jim
Jim Fox
215 San Luis Rey Road
Arcadia, CA 91007-3009
jfox215@hotmail.com
Thursday, October 23, 2002
>Hi everybody, Daniels out and we feel better. I will add more words,
but that's basically today's report. Toni and Daniel had an opportunity to
read my updates and decided that they didn't embarrass or offend so I was
asked to do a few more.
When I arrived at Albany Med around 8:00am Daniel had finished breakfast and
was dressed, ready to go. The release order specified a noon discharge so we
filled the morning with Pass the Pig, bad television, walks and laughing.
The time flew by and we walked out right exactly at the appointed hour. We
stopped at Chazan's Pharmacy for pain medicine and then came straight to
Fisher House. We haven't budged since then and don't expect to leave except
for emergencies like food or movies.
Toni was the only one who needed a nap so while she slept Daniel and I read
Hole by Louis Sachar to each other. Emily Olson Burke sent Hole to Daniel
and it is a wonderful book for kids, even fiftyish kids. We recommend it
highly. While Toni was asleep Ian Leet visited and brought us apple donuts,
apple juice and apples. You would never guess that apples are a big deal in
this parts of the country. The people in Upstate New York definitely fit in
the "salt of the earth" category.
We are planning a visit to Bard on Monday. Daniel wants me to see how
beautiful it is and we are hoping to meet a couple of his teachers and
friends. We might even try calling ahead and making real plans. On second
thought, that wouldn't be like us so we'll pass on the planning.
There was a hard frost last night and the remaining flowers all died. There
is nothing like cold weather to make you appreciate SoCal. We hope to see
you all soon. Jim
Jim Fox
215 San Luis Rey Road
Arcadia, CA 91007-3009
jfox215@hotmail.com
from Daniel, Thursday, October 24th, 2002
Well, I've been home from the hospital for about 30 minutes now and have just
finished reading all the kind messages in the guestbook. Thank you all for
supporting me and sending your prayers and good thoughts to me. It's great
to have this surgery behind me, and now the pain medication is really doing a
swell job of managing my pain.
Reading all your messages really makes me feel special. Now, I know the word
"special" is pretty ambiguous, but accurate. I don't know what to say to
thank you all, because I am pretty overwhelmed (and tired too from the 3 loud
and painful nights in Albany Med).
I didn't feel this way yesterday, but today I feel so lucky to have traversed
this surgery so quickly.
I'm still wearing the buffalo, but now without the helmet attached. I just
couldn't bear to part with Edmund (the hat) yet. Plus, I'm not too excited
about the whole hairless scalp look. However, I will switch Edmund for the
Angels hat to pull for the deserving team.
Ciao for now, and I can't wait to thank you all IN PERSON very soon. ~
Daniel
Friday, October 25th, 2002
Jim again -- Last night turned out to be a tough one. The enormity of the
changes in our lives and uncertain future was just too much. Daylight made
things better but the swelling in Daniel's face was back. We went to see Dr.
Emrich and he said it was probably just from sleeping, but to watch it.
(Dr.'s always tell you to watch it. It's kind of like they always mention
diet and exercise when I make it to the doctor's office. Of course we'll
watch the swelling and, of course, I won't diet and exercise. It's just that
easy.)
Anyway, we headed down to Bard College as part of a feel better program. The
college is beautiful and full of young people very much like Daniel. I think
it must have been the start of a "no adult" weekend because Toni and I were
at least 30 years older than the next oldest person we saw. Daniel met with
a large number of friends and had a great time. It make my heart feel good
to see him happy and in his environment. We may be going back on Sunday for
a dance concert that some of his friends are in. (I can hardly wait.)
After Bard we headed to Tivoli for dinner at a restaurant called Sante Fe.
It was very good but Southwest/Mexican food loses a little in the New York
translation. While driving to Tivoli we went down the road where Daniel had
his accident. He can't remember the spot but it is probably just as well. I
had a bad feeling going down the road knowing that it was the beginning of a
change in our lives that I would have rather skipped. Anyway, I'm always
telling the kids that you have to play the cards you are dealt so that's what
we're going to do. We appreciate the help and support from all of our
friends and family. Love to all, Jim