Last Update, Friday, June 11, 2004

June 11th, 2004
Today is my last day of lazing around; bright and early tomorrow morning I go to a full day of outdoor training for my summer job. It's going to be a lot of fun and a lot of work. And after a week of training, my 8ight-week tenure as a camp counselor with Tom Sawyer Camp Too! will begin. I'm very excited to improve my performance and hopefully the program (archery / wilderness living / recreation) I'll be heading.
By the way, I'm sorry for the previous update I wrote. I made a lot of silly mistakes that usually don't trip me up. But I'm moving on.

Would anyone like to read a book with me so we can share our thoughts on it as we read it? I'd love to do that informally with friends. Email me with "NOT JUNK" in the subject line and maybe we can set something up.

I'm starting to be able to smell certain scents again, most of them undesirable. But even that is an improvement! Smell is smell is smell, and that means rehabilitation of that particular sense is possible. Plus, the muscle movement in my right eyebrow and forehead is returning, matching the left side of my face more.

Saturday, May 22nd, 2004
The past weeks has been a blur. Or, at least the chronology of the events seem a blur. So, in no particular order : THE EVENTS OF THE LAST TWO WEEKS I flew to Salt Lake City Wednesday for my cousin Alex's wedding. Thursday night her family hosted a barbeque where the two families mingled (although de facto segregation was inevitable, i suppose) and learned basic Greek dancing. Friday night was the rehearsal dinner at an exquisite Italian restaurant. Its lemonade was ridiculously tart, making my Arnold Palmer nearly undrinkable, but the entrees were to die for. The wedding ceremony itself was long and tested the endurance of my legs and knees with the amount of standing it required. 600mg of ibuprofen later, I was ready to greet with Greek dancing the dance floor at the reception. Of all the steps in the 12-step move, I of course had trouble most with the first of the 12. Then the dj mixed of the rotation of songs and we got to dance to more traditional, pop songs. My sisters and I were all complimented on our dancing (evidently my ability to cut a rug proved my strength has returned; I'm still working on stamina), and someone even asked Betsy where she learned all her streetdancing moves. Obviously from California, since we're all so bad and fly out here in LA. Upon returning with my grandmother (who we stayed with while in SLC), I saw my neurosurgeon Dr. Frazee, who cleared me to lift objects heavier than 5ive lbs, go to the gym, sneeze, cough, and blow my nose. I'm particularly excited about the last of those activities being allowed now. Then two days later, my ampicillin drip for meningitis was discontinued - my final lumbar puncture had officially shown all illness gone from my body. Then, yesterday I was able to get my PICC line removed. It is SO cool and if you want to see it, just let me know. Dr. Browne let me keep it and I have it in a little brown bag in my kitchen right now. Sunday I am going to finish filming footage for the Discovery Health feature, and then I think this portion of the reconstructive surgery will be over. *knock on wood*

May 5th, 2004
Tonight is the Cinco de Mayo and I am feeling slightly more independent than I have for the past month. Mostly, I really appreciate the fact that I have gone just about a week now without a seizure, which is important to me. During my last bout of four seizures, I bit my tongue extremely hard, so I have a constant reminder of my precarious condition every time I swallow, whether it be food, beverage, or just plain old saliva.

BUT!

I saw Dr. Kawamoto today and he said that everything is looking good. My sutures are healing well and he removed the sutures from where my lumbar puncture was sewn up. I will be able to fly to Salt Lake City next week to go to my cousin Alex's wedding and I'm thoroughly enjoying spending time with my grandmother right now while she visits.

I'm staying at home and watching a lot of movies, so if you would like to come by and visit, I would be more than happy to welcome you into my family's house. Just send an email to olafox@hotmail.com beforehand (with NOT JUNK in the subject line) or call my cell phone at 626-375-8443 so that we know to expect you.

Thank you very much for your kind thoughts, prayers, and support throughout the ordeal of this past month and for your continued support.

Daniel Fox

May 1, 2004 8 pm
Well, once again, Daniel came home. He arrived about 5pm this evening after spending three days in the critical care unit at Arcadia Methodist. Toni reports that his seizure medicine just wasn't managing his condition, so they have increased it significantly. He is eating soft foods since he bit his tongue during the seizures. He is feeling apprehensive yet he is happy to be home. When we talked about "laying low" for awhile, he said that he is going to try to get through the Americn Film Institute's Top 100 films on Netflicks!

April 29th, 2004
At 4:00pm today Daniel had a seizure at his home. They called 911 and the ambulance came and took him to Arcadia Methodist. He ended up having a total of 4 seizures. He has had a Cat scan and an MRI and will remain in the Arcadia ICU, while the tests are evaluated.

Jeff Laun

April 26th, 2004
I spoke to Daniel tonight and the results of the blood test came back with the identification of the virus that caused the meningitis...and the knowledge that the bacteria was present in his spinal fluid. Specific antibiotics have been prescribed to counteract this bacteria so he will be on IVs for three weeks. It seems that he will be able to go home fairly soon, as long as a visiting nurse comes to check the PICC line (intravenous, central line) that will handle the antibiotics. Another MRI, CATSCAN, spinal tap, will be done before he comes home tomorrow.

Knowing Daniel's record for the unexpected and the challenging, I copied this prayer from two year's ago...

Jeannette's Prayer
O God, we pray for the well-being of Daniel who is ill.
Grant him enduring strength, and a sense of Your nearness.
Keep steadfast his faith, and keep him and his family from yielding to despair.
Grant wisdom and dedication to those who strive to bring healing and relief from pain.
Help those who share the anxiety which illness brings with it;
Help them to be brave and hopeful.
Grant us courage and confidence, and keep us ever mindful of all who are afflicted.
We pray together to you God, Healer of the sick. -- Jeanette, Brian, Kyle and Eli Weinberg

April 24th, 2004, 5:00 pm
Jim called and Daniel seems to be better! He has been transferred out of the isolation unit of Intensive Care and is now in the Neurological unit. The doctors feel that since he is responding so well, that they caught it in time for effective treatment. Jim sounded so relieved. Your prayers are a precious gift with amazing powers!

Mary Ann

April 24th, 2004
Last night, Daniel went back to UCLA since he had been vomiting. Toni called at 8 am this morning and told me that he has bacterial meningitis. She was told it is very virulent and it is very dangerous. He is in critical condition in the unit's cardiac care.

There are so many times over the last two years that all our prayers have guided him along the path toward recovery since his accident on May 3rd, 2002. We *know* the miracle power of our prayers...since we have seen it time and time again. Please enfold in your thoughts and prayers

Daniel, Toni and Jim, Emily and Betsy.

I will be posting throughout the day the various prayers that some of you have sent to Daniel over the last two years. This is The Eifert's prayer:

When we think of Daniel, Lord,
We think of his creativity, his unique character, his love of people and life...
We thank you for this special life,
And now we ask you to protect it.

We know you walk with us in times of trouble.
We ask now that you would gather Daniel up in your arms
And carry him through this uncertain and perilous journey.

You are the Great Physician.
You know Daniel’s every break and tear, as you know his every need.
We ask you to heal every vessel, bone and battered tissue,
Every thought, memory and feeling.

Give him rest where there is pain,
A will to heal that will overcome his frailty.
Infuse Daniel with your healing Love
And make him whole again.

Show us as his friends, Lord,
The many ways to lift up Daniel and his family.
Provide the Fox family with strength, wisdom and courage
As they face many fearful issues in this crisis.

Help our prayers and love be healing to Daniel,
That one day he may dance in your name.
We thank you for all you are going to do in Daniel’s life.
In Jesus name. Amen. --The Eifert Family

April 22th, 2004
Hi Mary Ann,
Daniel is finally home and we think this time he is going to stay. Just to give you a couple of updates here goes...

Last Saturday night after Daniel's surgery on Friday his heart rate and blood pressure dropped dramatically. His heart rate was 45 and blood pressure 84/49. It also looked like his kidneys might not be functioning. Jim described it as surreal as the night nurse would check Daniel and then go immediately to the phone to call the doctor...but very quietly, trying not to alarm him. They did a back flush on his catheter and that did the trick on the kidneys. Then they ran some blood tests and gave him fluids of some sort trying to determine if he had a small heart attack or was at risk of one. Luckily everything checked out okay but it was a pretty sleepless night for all.

Yesterday morning they told Daniel about 6:30 a.m. that he would be going home. He was elated! However, he noticed that he had some swelling in the middle of his forehead that was new, so he pointed it out to the doctors. They wrapped his head in a pressure bandage (a rather Civil War look) and rushed him downstairs for a CAT scan. This all happened by 10:00 a.m. THEN...we waited, and waited and waited to hear any word. Daniel tried to pass the time sleeping with the aid of pain medication, while I considered knawing off my arm. We finally asked the resident on the floor if he heard anything and he went to check. It turned out it was an air bubble, nothing to be alarmed about, his dura looked good and all was well...the time...7:00 p.m. I think you could feel the tension leave the room.

With increased spirits we unhooked his IV pole from the wall and decided to go for a walk. We stopped and asked one of the nurses if Daniel could go downstairs (since he hadn't been off the floor except to go to surgery) and she said ok. As we were waiting for the elevator his nurse came running over and said he wasn't cleared to leave the floor...rats! We were so close to escaping. We did finally get clearance to go in a wheelchair and about 9:30 p.m. Daniel got his first gulp of real air. We wheeled him into the courtyard just as a helicopter was landing on the roof. Then it was off to the cafeteria to get some real ice cream to celebrate.

This morning Dr. Frazee, the neurosurgeon, came by and told Daniel exactly what had happened. (He will have to fill you in later because he understands it best). The most exciting news was that Daniel could go home. He was dressed and eagerly waiting by the nurses station in no time. They actually sent us back to his room to wait... promising not to forget him.

His first stop (even before we went home) was Taco Lita. Then off to see Chessie Sauber in her classroom (where he has volunteered all year) and then to the high school to surprise the counselors and Dr. Sutro. He loved seeing friendly faces and talking to new people...(not that he didn't find my company incredibly stimulating for two and a half weeks). Finally we headed for home and he is currently napping with Lola and Ollie sharing the bed. He is in bliss...

There are no words to thank everyone for their thoughts, prayers and kind words. I cannot even begin to tell you what a difference it makes. Just know we appreciate each and every one of you and can't wait to see you in person.

Take care...Toni

April 20th, 2004
I spoke to Daniel tonight and he is still at UCLA on the 7th floor, Room 772....West Wing Neurology. After his third brain surgery, the lumbar drain was still keeping the fluids under control. Yesterday, they clamped it off and today they removed the drain from his back and sewed him back up.. So far so good...no other draining anywhere since the surgery.

He is really really bored....but he is resting and is still under observation. He can also walk around the hospital now...and today he had a consultatation with his doctor in the hallway!

He is understandbly frustrated but now seems to be on the mend...He anticipates going home on Thursday, Friday or Saturday......(maybe...)

Mary Ann

April 17th, 2004
Jim called with a report of what has happened since Thursday. On Thursday it was obvious that the "wait and hope the dura would heal on it's own" was not going to work. On Thursday Daniel was in the worst pain yet. They tried to get another surgery scheduled for that day, but they had to wait until Friday. On Friday, Daniel was in surgery for another 5 hours and the neurosurgeon said he fixed the known leak and found two other leaks that he repaired. Although we have heard that before. Daniel says "Third times a charm".

Friday night he rested comfortably and had a Cat scan on Saturday morning. They are currently waiting for the results of that test.

Jeff Laun

April 13th, 2004
I spoke to Daniel tonight and he sounded good...but bored (which is probably a good thing). He explained to me that the lumbar drain allows the cerebral spinal fluid to drain so that the pressure is off of the dura, and so that the dura can heal on its own, without another surgery. He knows that rest is the essential element right now. He anticipates being in the hospital until at least Friday, when he hopes to come home.

Mary Ann

April 11th, 2004
Daniel is back at UCLA Medical Center. The dura started leaking again. They put a lumbar drain in and they will watch him for 3 or 4 days. He will be staying at the UCLA medical center and hopefully it will heal on its own and they wouldn't have to operate again.

April 10th, 2004
Daniel is home today (Saturday) after staying in the BCU for 4 days (the basement ICU overflow area of UCLA.) All the closures of hospitals are definitely impacting the remaining hospitals in the area. As of tonight (Saturday night), Daniel is in some pain but it is manageable. He has a shiner (right eye) and his eye is quite swollen. His head was only shaved where the incision was but overall, he sounded wonderful to me!

Daniel's 8th grade teacher Martha Robertson sent this message, and I asked her if I could post it so that we could also include her in our prayers.

Please tell Daniel that I'm praying for him. What a coincidence--I'm having more brain surgery on April 13 and they will replace my left frontal cranium and go back in to check my aneurysm clips (I had the aneurysms when I had Daniel in class in 8th grade). We will both have the same weird hairdo!! I also lost my license due to seizures 2 years ago--I know a way to get the license back but it took at least 6 months for me. Again, I'm praying he's much better by now.

April 7th, 2004 at 3:40 pm
Betsy just called and Daniel is doing very well. They have him sitting up in bed, and he has an oxygen mask so that they can get his oxygen level up to where they want it. He is talking with his family. Joannie and Ryan Fiske were at the hospital since their neice is having a baby, and they stopped by to say hello. He has a low grade temperature (but as I remember, this is not unusual after major surgery... ) and he is very tired. They want to keep him awake for now so that he can work on his breathing exercises.

The surgery seems to have been successful and they feel positive about his vision since the surgery was very close to the optic nerve in his right eye (this was a known possible risk). The respiratory therapists will continue to evaluate him as they try to wean him off of the oxygen. They then will have a ballpark estimate regarding how long he will have to stay in the hospital.

Whew! Glad that is over! Chessie Sauber and I went down to the hospital last night to give the family moral support and some hugs...We stayed until the doctors called down to say that the operation was successful and that the hole was repaired.

April 6th, 2004 at 10:00 pm
After a long day of Cat scans and tests. Daniel went back in to surgery at 6:30pm, because of internal bleeding. There was another tear in the dura which covers the brain. They were able to repair it and feel confident that the dura is now in tact. At 9:15pm they called down to the waiting room and gave this report. At that time they still had an hour more work to put everything back together.

April 6th, 2004 at 7:00 pm
Toni called and the doctors have discovered a leak in the Dura around Daniel's brain. They are taking him back into surgery to correct the problem. The entire family is there at the hospital and would like lots of prayers for a successful outcome.

April 5th, 2004
Betsy just called Jeff and Daniel is out of surgery after 7 hours! Daniel seems to be doing well and the doctors were able to complete most of what they planned to take care of. All the family is at the UCLA medical center supporting him and they are doing well also.

In order to keep the facts fairly straight, I copied the section in Daniel’s update where Daniel explains what will happen in this surgery:

Removal of right frontal quarter of skull, to be replaced by layers of the skull from other portions of the skull; the skull will retain structural integrity and the forehead will once again be smooth. They were able to do these repairs.

Adjustment of the right eye to make symmetric with the left eye; small bones will be shifted, and larger bones will be re-broken and put into place. Bones around the eye socket were repaired and repositioned.

Realignment of the nose and septum. Done.

Realignment of bite by breaking and widening the right side of the upper jaw This was postponed, pending future orthodontia…future surgery may be needed.

Newly discovered tear in the dura around the brain was repaired.

Many thanks and good wishes are sent to Dr. Kawamoto and the medical team who assisted in the surgery…from Daniel’s virtual support network!

April 2nd, 2004
Ghost-written by Arthur Dedalus

With less than a week left before my final surgery, it seems appropriate to reflect back upon the past few months and how my life has progressed (regressed?) since my last update.

I continued working at the Barnhart site of the Tom Sawyer AfterSchool Camp until a week ago, when I quit to get away from large numbers of children and to let my immune system gear up for the surgery this Monday. Likewise, I spent my last day volunteering in Chessie Sauber's classroom Wednesday, March 24th. Since then, I have still tutored the five students I have been tutoring this year while getting healthier. I now feel ready for the surgery, and I still have a few more days of relaxation at home with my family.

Unfortunately, I no longer drive. I had a seizure in January, but since it was caused by my failure to take even half of the correct dosage of my anti-seizure medication, a decision was made to continue driving once my blood levels of appropriate acid had stabilized.

Unfortunately again, I had another seizure in early March while driving on Laurel Canyon with a friend. I was indeed taking the medication this time, although one that had been recently changed. Luckily, my quick-thinking friend pulled the car onto an empty uphill street and put the car in park. No one was hurt, and no damage incurred.

After a very long and scary night for my family, friends, and myself, my mom and I headed home in my car. Near the Rosemead exit, the Toyota's engine blew and my mom coasted the car off the freeway where we waited for AAA to rescue us.

The moral of the story is, I am no longer driving and won't be for a long time. So, I am back to using trusty Arcadia Transit to get around. So, if you know of any hidden gems in Arcadia just waiting for my discovery, please send them along to me at olafox@hotmail.com so that I can find something to do in the next little while.

Wait. Strike that. I won't be doing much in the "next little while" since the "next little while" will be spent recovering from my surgery coming up this Monday. Ah, my craniofacial surgery. Here's a run-down of what's going to happen:

Removal of right frontal quarter of skull, to be replaced by layers of the skull from other portions of the skull; the skull will retain structural integrity and the forehead will once again be smooth

Adjustment of the right eye to make symmetric with the left eye; small bones will be shifted, and larger bones will be re-broken and put into place

Realignment of the nose and septum

Realignment of bite by breaking and widening the right side of the upper jaw

Luckily, I have an amazing plastic surgeon working on me. Dr. Kawamoto, who separated the Guatemalan twins conjoined at the head a year or so ago, instills tantamount faith in my family and me. He also has a reputation of being "the god of plastic surgeons." Even so, my family is somewhat nervous about the procedure coming up.

Myself, I am greatly looking forward to this surgery so that I can be finished with the whole ordeal of the accident. Granted, my life has changed in ways that I can't even begin to imagine, and I will probably never be fully recovered emotionally from the loss I experienced during these past two years. But the medical part is done. From here, my improvement is all up to me. And while that at times seems daunting, at least now I'll have everything under my control.

I want to thank everyone who has helped my family and me since the accident, and I can't wait to give you good news after the operation. Ciao!

November 14, 2003 I wrote last that I would no longer write updates. Well, it turns out that I'm not only impulsive (with a histrionic streak), but I'm also a big fat LIAR. So here's another update.

Nearly a year ago, I had already completed my cranioplasty and aortic transection. So I suppose this is about the time I first went to the emergency room to see why I simply couldn't stop coughing for up to forty minutes on end. But atypical pneumonia ended up being a temporary thing.

But that was then. And a lot has changed since then, even since my last update in March. June 11 this past year, I had the pins and screws removed from my femurs. It didn't seem like a very major surgery to me, but my parents, Sandy Grams and Mary Ann Laun would beg to differ since they heard Dr. Takei (my surgeon) explain the details of the surgery. Evidently I had loose chunks of bone hanging out in my knee that should have caused me much more pain than I complained about. After the surgery, I didn't respond to morphine very well (in fact, my pulsox was down to 43%), so they had to neutralize all the narcotics in my body.

Let me tell you, without a back-up medication for pain management, having all the narcotics neutralized in your body within two minutes hurts s whole lot.

Immediately afterward, I started working at good old Tom Sawyer Camp in Arcadia. I joined the staff this past summer as one of two Archery/Wilderness Living/Recreation counselors with Anne, an awesome counselor who goes to UC Santa Cruz. Being outside five days out of the week for eight weeks helped speed my recovery along, even though I wasn't always the most nimble (or loud) counselor. But I worked around these challenges, and summer ended up being a success.

I started Pasadena City College with a little too much ambition this past fall. I signed up for five courses, four of which were bound together in an "arts and sciences block." This block was called "Los Angeles: Trasition and Erasure" and attacked the subject of Los Angeles through English, Environmental Art, Cinema, and Environmental Science. The fifth class, US History, I dropped within the first week. Although dropping just one course didn't prove enough. The Los Angeles block of courses was quite rigorous, and my health declined steadily with each week. By early October, I was barely maintaining As in my classes, but I was vomiting nearly twice a day. Determined to find out the cause of this nasty development, I saw a neurologist who found I had an ulcer, but could not find a cause for the vomiting. Fearing I had hydrocephalus (pressurized water in the brain), I was told to get an MRI then see a neurologist. It turned out that my head was fine, but my osteoporosis medicine (and, I think, the stress I was placing upon myself) was causing acidic conditions in my stomach that caused the vomiting. So I dropped out of school to focus on my health and discontinued the medication with the blessing of my orthopaedist, and am now doing quite well.

My voice is stronger than ever now, and I am growing accustomed to living at home in Los Angeles now. I've made some new friends who are quite dear to me, and still get a chance to visit with my old friends. In fact, I just traveled up to San Francisco to spend the weekend with Mindy, and together we saw Patrick in the "Mighty Wind Tour." Since we've known Patrick quite some time, we not only got to see him but got to go backstage. It was awesome to see Mindy and Patrick, and he plays a mean banjo in the New Main Street Singers.

Now I'm studying orchestral scores and reading in my spare time. That is, when I'm not working for Tom Sawyer's After School Camp twice a week or volunteering with a preschool- and kindergarten-aged class of children with autism and language delay challenges. I feel very fulfilled with the way my life is going right now, and am looking forward to the final surgery I have: facial reconstruction this winter. I doubt it will be any worse than my other surgeries, and it will be nice to have all of them behind me.

Once again, feel free to email me at olafox@hotmail.com if you want to get in contact with me. I may not catch them in the junk mail folder, but I always look out for them. Ciao for now!

History:
Daniel was in an bad automobile accident on May 3rd. He was leading a caravan of Bard students into the town to do an outreach to teenagers there. Toni told me that Daniel was driving on this country road when his back wheel hit the soft shoulder and he swerved to correct and overcorrected into the oncoming traffic. He hit a Cadillac in a head on collision. Luckily, the people in the Cadillac were not critically injured. The town closed the road and 20 rescue workers were there to assist. He was airlifted to Albany Medical Center where he was in critical condition and in ICU until July 28th. He was then moved to Sunnyview Rebilitation Center in Schenectady, where he was undergoing acute rehabilitation. He returned to the Fisher House to do outpatient rehab and had his bone plate reinsertion surgery on October 21st and heart surgery on October 30th. All went well! He and Toni returned to home on Tuesday, November 26th!

March 24, 2003 Having just finished watching the Oscars, I figured it would be appropriate for me to write an update. Not for any reason associated with the content of the Oscars, really, but mostly because it was over a lot sooner than I had expected.

This is going to be my final update, because I feel the drama of my recovery has come to a lull that will not pick up. I am still going to physical therapy three times a week, and I am increasingly gaining flexibility and strength in my knees. My orthopedist says that my process is going very famously, so hopefully soon I will be able to have a normal gait.

I am now doing data entry at the corporate office for Capitol Reprographics (soon to be Capitol, llc), a company that photocopies and images for lawyers. It's really far from exciting, but it's a job that supplies me with the little bit of money that I want. Which is really not that much, since I don't drive at the moment and most of my friends are far far away from Arcadia.

Recently, I flew up to San Francisco to visit mi amiga Mindy. She is SO SUPER RAD to hang out with, and I really enjoy her friends Jenna and Rachel. We ate at a slightly expensive (for college-aged students) but enormously delicious Thai restaurant called Thep Phanom just a block away from Haight (which is sadly ultra-gentrified now). We also went to Castro and a store I had only read about in very cool feminist publications until my trip there. I feel like I can more rightfully call myself American now that I have been to San Francisco. Now I just need to visit Seattle again and check out Chicago.

By the way, huzzah for Chicago doing so well at the Academy Awards! I simply must see it a third time. I also need to see The Hours, Far From Heaven, and The Pianist. I think 2002 was a lucky year for hosting such appealing movies.

I may, in May, undergo surgery to remove the steel rods from my femurs. I hope to have them removed a month before Tom Sawyer Camp training so that I can fully recover for my outdoor day camp job. We'll see, though. And I'm still waiting to see what I will be doing this coming fall in terms of school. I am hoping for the best but also keep my options open.

Well, if anybody would like to contact me, feel free to write me at olafox@hotmail.com so that we can establish contact. Thank you very much for keeping me company and supporting me during this long, hard year. But things are always looking up. Good night.

*heart* Daniel *star*