Alan was diagnosed with a tumor on the frontal lobe of his brain on Tuesday. Today, Monday, he will he having surgery to remove and diagnose the tumor. Please join his friends and family in praying for his diagnosis and recovery. Alan, his dad "Big Dog" Andrew Sweeton, his mom, Ginny, and little sis, Amber (who are all amazingly supportive of us) now need our support. Please post your well wishes here, or, if you have a moment, send a story or a joke to [email protected] Alan, we love you and you'll be back on the course in no time at all!

Get well soon Bigs, thoughts are with you.

Thoughts & prayers sent...

ditto...

hope all goes well and alan makes a speedy recovery

From Alan's father Andrew Sweeton

All, The Dr. just called us in the waiting room. After 3 hours and 45 minutes they are now starting to close up. He believes they got all the tumor out but won't know for sure until another MRI. They left a ventricular drain in for now as the tumor reached into a space that normally has fluid and this will also allow them to easily monitor his pressure. He reiterated that Alan will likely have weakness on his left side that will hopefully be transitory. Hopefully within a few hours he will be in ICU and we will be able to see him. Thank you all for your continued thoughts and prayers. Andrew

Thank you for the update.

Alan -- Central Virginia is wishing you a speedy recovery.

I don't know Alan, but our prayers are with a brother in disc golf. Get well soon. God bless him and his family.

Best wishes for a speedy recovery from the Duran family, Manny, Pat, Chris, Nick, Desiree and even from our pooch Valkyrie! God bless!

from last night:

Alan is in the neurological ICU unit. Although he is sleeping, he did open his eyes a few times and said a few words but is pretty much still out of it. He has a good grip with his right hand but his left side is currently non-responsive. Everyone seems very positive about how he is doing. We shall see how he is in the morning, thanks for your continued prayers and support!

C'mon Bigs, get well soon and come out to CO :-) Marsha and I wish you the speediest of recoveries.

Good news from Big Dog- Alan is sitting up, talking, and met with the physical therapists. He's been able to move his left leg and arm, even the toes and fingers. ;-) And his mom has finally managed to feel hungry enough for a meal! If that's not a good sign, then I don't know what is!

GREAT to hear!!

that is AWESOME NEWS...

Way cool to hear

AWESOME>

That's great news.....get well soon Alan...mine and Craiggers thoughts are with you and your family. Keep those good updates coming :D

More good updates... Big Dog said that the MRI results look good, he's making "amazing" progress on moving the limbs on his left side, and he might be out of ICU soon! He's in good spirits, making jokes, and eating solid food, too. ;-)

Great to hear, thanks Kit!

Great to hear his vast improvement...keep it coming!

Alan is almost ready to be out of ICU...he has what has come to be called the "brain drain" in his head (a tube that relieves pressure in his head), and as soon as that comes out he can move to a regular room and may even be on his way to a rehab center on Monday. He took a little fall today (nothing bad, left leg gave out a little) so he now gets to wear an orange wrist band- which the nurses think means that he shouldn't wander around without one of them. Alan believes that it gives him free beer privileges. I gotta say if Lick and the MSDGC boys get to see his haircut, they will be so freakin' jealous!!
Keep the prayers coming for Alan and his family please!

Mmmm, free beer...note to self ~> I gots to get me an orange wristband! :cool:

Keep up the good work, Bigs!

From all us MD golfers, our thoughts and prayers go out to Alan and his family. Get well soon!

A bit of a setback for Alan...he's probably going to have to go back under the knife on Monday to have a brain shunt put in. The doctors were hoping to get away without it, but Alan will be able to move on quicker to therapy if it is put in. This is considered to be a pretty common thing to have happen, but still kinda crappy. On a brighter note, the surgeon confirmed on Friday that the entire tumor was indeed removed. Alan's also looking better everyday- and seems as upbeat as always!
He doesn't have access to a computer yet, but any e-mails sent to [email protected] go right to his blackberry which he has with him.

BIGS, you da man.

BIGS, you da man.



He sure is!

I visited him yesterday for about two hours... he's looking good, has a GREAT appetite (he ate all of his food, where he could barely eat before the surgery), and still had his funny sense of humor (i was showing him that my arms were sun burned from a tournament the previous day, to which he replied "yeah, you've got a sun burn, I've got 53 staples!".

Keep it up BIGS! We're ALL pulling for you.

E

Everybody sing with me:

"We love you Bigsy, oh yes we do, we love you Bigsy, and we'll be true. When we're not with you, we're bluuuuuue! Oh Biiiiiigsy we love you"

Its pouring rain in Philly yet again, but Alan looks much better today! The wounds on his head and belly from the shunt operation hurt a little bit but no big deal. He's been downgraded to plain old regular Tylenol - "No more good stuff" says Alan. :^( They did a series of X-rays this morning to check out the shunt in his belly - no word yet on those but Alan doesn't have a headache so it must be working! At about 9:30 the Physical Therapists took him for a walk down the hallway and were thrilled with how far his left side has come. The Speech Therapist was in and with a little coaching, and deliberate thought, Alan was able to add some inflection to his speech (note: she's also way cute.) She was pleased and said she thought he could have a script for outpatient speech therapy. She is also going to have an opthamologist see Alan to take a look at his sight issues which haven't improved. At 1:30 they unplugged him from everything, and removed all his sensors - he's a free man! They expect to move him to a regular room later today. We saw the PA who is going to check again on the tumor and brain fluid pathology results. She also said that the PT folks were so pleased with his progress this morning that they are going to skip the in-patient rehab and send him home instead! We will now have to check out where he can get good out-patient therapy. Who knows - maybe he can end up getting matching appointments and ride along with his grandfather when he does his knee replacement therapy! So in all, #16 is a very good update. Please keep the prayers coming on the tumor pathology, that's the next huge obstacle. I had a nice chat on the phone today with a dear disc golf friend - Sam Covington of Innova in Rock Hill, SC. He asked if Alan and I would be down for the United States Disc Golf Championships again in October and I told him absolutely! Besides praying for Alan he sends his kind regards to BOB and Kit and reminds them that they still need to "do lunch." We certainly will all do that in October Sam! Our best to Zeb and all the Innova staff who have been keeping Alan in prayer! I will send another update later with room info and driving directions so those who are close enough can visit. Thanks all and God Bless, Big Dog

WOW that is all GREAT NEWS!!!

Update?

Well, it has been a real roller coaster ride of emotions since the last update. Yesterday the doctors mentioned that the abilities Alan has on his left side are only what they would have expected to see after 4 to 6 weeks post-op and in-patient physical therapy, not just a week laying around the hospital. So they thought they would send him to a regular room and then discharge him on Wed. (today) to home. Then late yesterday we saw the chief resident who worked on Alan's operations with his neurosurgeon. Alan's tumor pathology came back and it's unfortunately not benign. It has a ridiculous name: Oligodendroglioma. The doctor stressed that we should be very careful about searching the internet as there is a lot of bad information out there. He said the UPenn or Mayo Clinic sites were the best. Although it is too early for specifics on the treatment, Alan will need radiation and chemo. The good news of the bad is that this kind of tumor is treatable (unlike what Senator Kennedy has.) The pathology is also not yet complete. This type of tumor can be missing one or two chromosomes. If it is missing one good; if missing two, even better. Apparently if missing these chromosomes, it is more responsive to a certain drug in pill form that Alan can simply take at home. It will take 2 weeks to get back this pathology report. Regardless of the treatment the neurosurgeons, radiologists, and oncologists agree on, it will be several weeks before it starts. They want him to get home and fully heal from the operations before he does anything else. Alan is now in a regular room - 727B - STOP - STOP - this WAS as of about 4:30pm yesterday - SURPRISE! he's actually now in Edison NJ. We went to Philly today with the expectation that we were bringing Alan home and as of 11:30am we were set to get him out at about 1:30pm. After a talk with the PT folks and a description of our little old farm house, the stairs, bathroom, etc. they decided it would be best for Alan to spend a week in a rehab facility where he could get some intensive therapy with strengthening, stairs climbing, etc. He was very, very disappointed as he said he envisioned himself within a few hours sitting on his tailgate with a cigar and his dog. So, at about 2:15 they took him off in an ambulance and drove him up here to Edison. If anyone would like to visit Alan he is in Room 3537 on floor 3 - East Wing. The address is: JfK Johnson Rehabilitation Hospital65 James StreetEdison, NJ I think Lot B is Rehab parking and thankfully is free. (The $15 every day in Philly for parking was starting to really add up on top of the gas cost back and forth each day.) Visiting hours are: Mon - Fri - 4 pm-8:30 pmSat - Sun - 1 pm - 8:30 pm Thanks everyone for their continued support and prayers for Alan. God Bless, Andrew PS - I will try to get an email out with some photos tomorrow.

****. We're all here for ya Bigs.

Bigs, your dog and cigar on your tailgate are just around the corner... Chin up, shoulders back...but throw with the nose down...BIG follow~through!

Sorry for the very late update. This morning was spent on the phone with Alan (we are not allowed into JFK until 4pm), on the phone with various medical personnel, on conference calls for work, and planning things for the house like a hand-rail for the stairs and handholds for the tub, etc. Early afternoon was a Walmart trip enroute to Edison for gym shorts, underwear, ginger ale, etc. for Alan. Paramount for Alan was a little clip-on fan for his bed rail as his JFK room is a very hot 70 plus degrees where the NICU in Philly for the last week and a half was about 58 degrees - even I was wearing a fleece in there most days. Unfortunately today was a bad day for Alan. He started off with a headache and throwing up. The pain, the sudden throwing up without feeling nauseas, and the lack of appetite were frighteningly like his condition prior to the operation. Our immediate concern was that the shunt was not doing it's job and the pressure was building up. After a couple of discussions with Alan on the phone during the morning where he didn't seem to be getting better, I got a hold of the nurse at JFK to ask if the doctor was planning something. She said he had just written the order for a CT scan. I then called our PA in Philly to let him know what was going on and he said he would call the Dr at JFK. At about 3pm they did the CT and at about 5:pm? we saw the Dr. at JFK. He said the CT didn't show any unusual swelling, but there might have been some "shifting" of the brain that caused the symptoms. He said they didn't have a previous CT to compare with to be sure, so Ginny handed him copies of the CTs from Philly that we had the foresight to bring with us. He should have more news for us tomorrow. So they are treating the symptoms with pain killers and anti-nausea drugs. Alan felt a little better around 6:30 and finally drank some liquids and ate a little bit and kept it down. His head still hurt and he felt best laying down. A couple friends called his cell but he felt so bad he didn't want to talk, so I just relayed their messages to him. We also talked to the Dr. about Alan's vision issues and he said they would have the neuro opthomologist group check him out. We then asked about Angel visiting him and he said that he felt Alan could probably be allowed to go outside in a wheelchair this weekend so we will drive Angel up to see him. They both will be thrilled. Amber should also be over her cold so it will be a great day for Alan as he has missed his sister. "She'd better be better soon and come visit - I kinda love that kid" are Alan's words. The "kid" will probably want to exercise her driver's permit on the way to Edison as she hasn't had a driving opportunity for two weeks now. Well, I'm off to bed dear friends. Exhaustion is clouding the brain and I'm looking at the blackberry cross-eyed. No school tomorrow so I don't need to be up mega early to see Amber off, but I do need to go into the office for most of the day before heading off to see Alan. Hopefully he will have a better day tomorrow than today. As always, thanks for caring, thanks for praying, and may God Bless you and yours as He has blessed us through you. Andrew

All - I fell asleep trying to do the update last night so this is yesterday's and today's. Yesterday (Sunday) was a fair day for Alan. He had pain meds at 8:45 AM and then didn't need any more until about 6:30pm. Yesterday was also a very busy day for Alan. He got his hour pass off of the unit and on the way outside another patient in a wheel chair refused to use the elevator with us and Alan said "He was probably scared to get on the elevator with me." It's true - with his half a head of hair sticking straight up in the back, blackish eye, and huge beard, Alan did look rather maniacally Rasputinish. When we got outside with him not only Amber and Angel were waiting for him but the Van Liews as well - Uncle Brian, Aunt Barbara, and cousins Theodore and Morgan. We had a real nice visit on a beautiful day and Alan really enjoyed seeing the Van Liews and Uncle Brian's scalp massage. Just as the hour was wrapping up, our dear friend John Duesler arrived. So when time was up and Alan had to go in, the Van Liews kindly took Angel home, as Poppy and Theodore had done the day before (thanks everyone!) and Dr. John visited for a while in the room. We had a good talk reminiscing about past Philly Opens (remember that horizontal rain in 2006?), the 2005 PDGA Worlds, how Rocco got his name, the Little Lehigh course, etc. After Dr. John left I got the clippers out and Ginny and Amber helped me buzz the rest of Alan's hair off, trim his beard, and shave his neck. Despite the swelling, scars, and staples that remain, he still looks a million times better. After the "big clean up", my Uncle David and Aunt Janet from Cleveland arrived and they had picked up my mother Elena on the way through the Poconos. We had a great visit punctuated by a lot of hustle and bustle as another patient arrived to be Alan's roommate. Michael is in his 40s and has had a stroke, so he and his family could use everyone's prayers too. We had a real nice visit with David, Janet, and Elena/Mommy/Grandy and then Uncle Dan (my best friend since 4th grade and Alan's Godfather) arrived which was great timing as my mom had not seen him in a while. Eventually they had to get on the road to get to the Poconos for the night at my Mom's and then David and Janet would make the long drive back to Cleveland on Monday (today.) Many thanks for taking the long drive - Alan definitely appreciated seeing you guys! At one point later in the evening after Alan's dinner the loudspeakers in the hospital suddenly blared out: "RAPID RESPONSE TEAM TO BTU! . . . RAPID RESPONSE TEAM TO BTU!! To which Alan quipped "Gee, I hope they don't mean me, 'cause my response is not too rapid right now" We visited some more with Alan and Uncle Dan and then decided to head out at about 8pm to get home at a reasonable hour and get some sleep. We prepped Dan on how to tuck Alan in with his ipod playing through mini speakers for the night and said our goodnights as he settled in with Alan for some scripture reading and prayer. __________________________ Monday (Happy Memorial Day!) Yesterday they decided the Tylenol3 wasn't really helping Alan so they switched him to something call Dilaudid. It seems to be more effective as this morning Alan finally ate some breakfast (first time in a number of days.) Ginny googled it and apparently it is a narcotic that provides for a more constant level of pain relief as opposed to the sine wave affect of other pain relievers. Alan had a bunch more visitors today: Angel, Amber, Uncle Dan, Keith and Melissa Arnesen, BOB Graham, Kit Basset, and Derek "FATS" Sonderfan all the way from Reno (Hi Ashley!) Unfortunately Dan and I missed Keith and Melissa as Angel needed to be returned home after Alan's one hour of freedom and Dan must have thought I looked beat as he insisted on driving me back and forth. Alan had a craving for mozzarella sticks and unfortunately the nearby Italian restaurant, that Pete Toth tells us is fantastic, was closed for the holiday. So Dan and I cranked up the GPS and headed for the closest Burger King. (Ginny swears the mozzarella sticks there are really good - yuck - but who am I too judge - I don't like mozzarella sticks anyway.) Well, after navigating a few roads in Edison we ended up with the GPS saying "arriving at Burger King on left" which much to our surprise turned out to be a mall entrance for Macys! We were game, entered Macys and eventually found a Burger King half way down the mall on a lower level. I told the nice girl behind the counter that I needed three orders of mozzarella sticks for someone in the hospital so they needed to be as fresh as possible to still be hot when we got to the room. She obliged and had a fresh batch fried up and Alan, Ginny, and Amber scarfed them down so they must have been OK (note: Andrew shudders here.) Alan also ate every last scrap of dinner tonight and although he last had pain meds around noon he said his head "wasn't too bad." Alan's biggest physical complaint besides headache is that his legs hurt a lot. His hamstrings are very, very tight and the two days of PT followed by three days off probably didn't help too much. It's actually quite remarkable how much thinner his legs have gotten after just two weeks in bed. Tomorrow his weekday schedule starts up again with Physical Therapy, Occupational Therapy, Speech Therapy, and Recreational Therapy (I told him to tell them that his putting from outside of 25 ft. needed work.) We suspect he will be beat by the end of the day. Tuesday is "rounds day" so we have a meeting with his case worker at 4pm tomorrow to find out what the staff's evaluation of, and recommendations for, Alan are. Right now our biggest concern (besides the whole cancer thing) is his eyesight. He has no peripheral vision and his forward vision is very blurry. He also has a hard time seeing anything if it is at all dim in the room. We will push again tomorrow for the neuro-opthamology team's evaluation if it's not already done. Alan continues to amaze us with his strength of character. Despite everything he is going through he continues to be concerned about other people's well being (prayers for Michael his roommate and Tommy the patient who the Rapid Response team was called for, etc.)and is gracious to all saying please and thank you for anything that anyone does for him. He sends his love and thanks to all those who are sending emails, cards, positive energy, postings on the facebook wall, prayers, etc. He's sorry its not possible to respond to everyone individually right now and begs their forgiveness. In all, despite the lack of a picnic, parade, or being at the beach, it was a good Memorial Day. Tomorrow the stress levels go back up as Ginny and I both try to assimilate back to working most of a day while also running to Edison to visit with Alan and hear from his doctors. Many, many thanks for your continued love and support, Andrew

How's our boy Bigs doin'? More positive energy on the way!

http://www.nefa.com/phpbb/viewtopic.php?t=3736

Thank you!

Don't lose any more weight, i don't wanna call you Littles.

I'm happy to report that Alan did get to go home today!!!!

AWESOME!

I'm happy to report that Alan did get to go home today!!!!

Awesome.

Great to hear!!

Sorry folks, very busy with juggling work and caring for Alan. I was going to wait until tonight after our Radiation Oncologist visit for an update but I understand some people are very upset and worried due to my "silence." I will need to keep it brief as I need to get to work. Alan is very happy to be home. He is sleeping well which is an improvement over the last week in the rehab hospital. He thinks his eyesight might be a little bit better, but its hard to be sure. He can move around fine physically, he just can't see, so he needs a guide and needs to go slowly. So no significant improvement there yet. We are all adjusting to having a blind Godzilla in the house who needs 24 hour care to prevent him from knocking down walls and killing us all. During the oppressive heat (101 degrees) on Tuesday we rambled around downtown Philly and saw the surgeon, the radiation oncologist, and the medical oncologist. We didn't learn a whole lot except the Surgeon is very happy with where Alan is at and says we should stay away from radiation; the Radiation Oncologist says Alan needs 6 weeks of radiation then Chemo; and the Medical Oncologist agrees with the Radiation Oncologist. The Neuro/Oncology summit was to be Tuesday night and they would all discuss Alan's case with a fourth doctor who is apparently brilliant but kept away from patients due to her demeanor (remind anyone of a TV show?) And then they would inform us of the agreed course of treatment on Wednesday. Both oncologists are happy to refer us to highly regarded colleagues in Princeton. Once Amber is out of school on the 20th she will need to bear the burden of daytime caregiver (Although I can work from home when necessary) and I can run Alan to radiation on my lunch hour as it is 4 miles from work to home and about 3 miles from work to the hospital. So . . . why we visited everyone on Tuesday I'm not sure except the Oncologist did get blood for a baseline on Alan (I've got $100 that says the Princeton guy takes blood too.) Oh yeah, the Surgeon took him off 4 of the 7 prescriptions he was on (I'm glad I only filled them for 10 days) and scoffed at the particular doses of vitamins JFK had prescribed saying "take a multi-vitamin." So . . . we have officially gone through stage 1 of scared silly with brain surgery and come out the other side feeling pretty good about things (except his blindness) and have now moved to stage 2 of scared silly with the whole "C" word - Cancer. Yesterday the Oncologist called. The agreed plan of treatment is pretty much what they had been saying all along. Alan will have radiation treatments 5 days a week for six weeks starting as soon as possible (oh well, no two weeks vacation to Maine for us this year - although we might take a few days at home just to sleep.) During that time he will also have a reduced dose (180 mg) of Chemo seven days a week. The chemo is a pill called Temodar he will simply take at home. It reportedly has minimal side-affects and they have 80 year old patients using it with no problem (Alan's particular tumor is very rare and generally only found in people over 70 years old - go figure.) After radiation he will take an increased dosage for 1 week each month for 6-12 months. When radiation is done, Alan will go to Philly to see that doctor who doesn't usually see patients. A "protocol" for a new chemo drug is opening up in 4-5 weeks. If Alan meets whatever the criteria is he would go on this protocol instead of the 6-12 months of Temodar. The other thing we learned on Tuesday is the limitations of Alan's insurance. It looks like radiation will be covered. However, for the medical oncologist they only cover the first $700. I pretty much suspect we have already burned through that so the monthly visits for checkups and bloodwork will be out-of-pocket. The real killer is that chemo is not covered at all and without a prescription plan we will be paying the "cash" price for the Temodar. Even when buying cheaply on-line from Canada, the 180 mg dose costs over $300 per pill so the chemo for the six weeks of radiation will be over $13,000 alone. The cost for the potential 13.5 months of chemo is $30-40K out-of-pocket -- yikes! The oncologist's social-worker and Ginny are both working on applying for assistance programs for Alan. Since he was an hourly worker and currently has zero income, hopefully the drug company will help out with a reduced cost. Of course if his eyesight doesn't improve he would likely become eligible for federal Disability and Medicaid. But let's hope that doesn't come to pass -- to permanently lose the ability to read, watch TV and movies, and play Disc Golf would be absolutely devestatingly horrible for Alan. My prayers are that his eyesight greatly improves even if it means I have to use our life-savings for his treatment. I trust that God's will be done and He will provide. So anyway, I've got to get to work and then get home to take Alan to a 2:30 appointment with the Radiation Oncologist whose office hours today are in Jamesburg NJ. Once we know his radiation schedule I will let everyone know so they can modify visiting times at home. Alan does greatly appreciate visits as they are a very welcome distraction. Due to the hard work of friends, the back patio is a very nice place for visiting when it's not 100+ degrees out. Many thanks from all of us to everyone that has sent food to the house as well. Please continue to send notes and jokes via email to my address or Alan at [email protected] as they are a wonderful blessing to him as well. Thanks for your continued support and prayers, Andrew BTW - again, my apologies on the long wait for an update.
--------------------------

Yay he's home! Boo the price of the drugs. Hang in there Gadzooki.

Alan's second tumor pathology came back....it's missing two chromosomes which means that it is the type that responds very well to chemo/radiation therapy! Good news again! ;-)

great.

Great news!

Two bits of good news for Alan...he got to throw a round of golf today with Big Dog, the Enmans-who are visiting from Maine, B.O.B., and "Sumomac"( while his sight isn't doing too great, he was able to see the contrast of the basket against John McGinley's black shirt for putting) and Schering-Plough is covering the cost of his chemo (which wasn't covered by his insurance and probably had a price tag around $100,000). He told me about how good it felt to have his disc golf bag back on his back before he mentioned the chemo news, hmmm... important things first ;-)

On Wednesday Alan went to Princeton and had the dry run with the radiation folks. They reported all went well. He has a standing 9:15am appointment for his daily treatments that are scheduled to start on Tuesday. Alan also had a CT scan on Wednesday. We sent a copy via DHL to the neuro-surgeon in Philly and took it with us to the Neuro-opthamologist on Thursday. They are still looking for the disc in Philly as DHL took it upon themselves to deliver it to the hospital instead of the address we sent it to. We will deliver a copy personally on Monday when we go to visit the oncologist. On Thursday we visited the neuro-opthamologist again. He said the new CT showed the ventricles to be smaller. He thought his tests with Alan showed no change in his sight, but Alan thinks it is a bit worse. He says he can still see what little he could but everything is now cloudy like in a bright fog bank or a smoke-filled room. The doctor didn't know what to make of it and wanted to know what Philly thought, but Philly, of course, never got the disc. The Neuro-opthamologist called Friday late afternoon to say he had been thinking about it some more and he is very concerned. He said there is no proof the shunt is always working. He thinks even less pressure would be better and wants us to consider a bigger shunt or an operation to slit the sheath around the optic nerve on Alan's right eye to relieve pressure. It is discouraging that he seems to have written off the left eye and is now talking in terms of not losing any more sight as opposed to regaining sight in the right eye.. He suggested we see some neuro-opthamologists at HUP for a second opinion, but he wants us to do it ASAP on Monday when we are already down there for our oncologist visit. We expect an early Monday call from Ben at the neuro-surgeons and we will ask him then about setting us up with a HUP doctor. Of course if the decision is to do any operation it will screw up the radiation/chemo schedule. From the Good News Department: Ninety 100mg pills of Temodar (chemo) arrived FedEx from the good folks at Schering-Plough on Thursday. It was weird to hold a 1/2 pound box in my hands that was worth more than my jeep. We also had a luncheon at GfK (where Alan and I work) on Thursday. Workmate Kurt Kusenko runs a fund-raising lunch every year for the Autism walk, so he decided to run another one to raise funds for Alan's medical expenses. About 20 volunteers cooked entrees, salads, and desserts and everyone in the office was invited to eat lunch and make a donation. Unfortunately we had to leave early for the eye doctor appointment in Edison, but it was great to eat some awesome food and see all those folks come together and support Alan. Kurt stopped by the house after work that evening to return my crock pot (I made Mango and Pineapple Pork with Brown Rice) and give Alan the $2,228 (wow!) that was given by our wonderful work family. Thanks everyone! And thanks so much to Kurt for organizing a great event! A number of other friends have inquired about fundraising for Alan so we took the money and opened a separate bank account just for that purpose. This weekend I will setup a PayPal account linked to that account and get that info out in a later update. I've also ordered a bunch of "Alan's Army" wristbands (like the yellow Lance Armstrong ones, but in a desert-camo color) and we will start selling those to raise money as well. On Saturday, Nick and Rebecca visited. Nick (Alan's college roommate) actually was also here on Wednesday night as he stopped in since he was in the area anyway. Turns out he was in Princeton filming Transformers 2. [Great story - Nick mentioned to Shia LeBeouf (the star of the movie) that it was his 13 year old sister's birthday and Shia said "let's call her and wish her a Happy Birthday" - that must have been some surprise for her! Other Liberty University pals Woody and Jules also visited on Saturday. But the visit Alan looked forward to the most all week was from his favorite Physical Therapist, Gina, who got here at about 3pm and stayed to after midnight. Thank you all for your continued support. I will let you know what happens on Monday. God Bless, Andrew
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The JFK neuro-opthamologist called me at 8:30 last night to say he got a hold of a counter-part at UPenn. He gave us his home phone number and said to call him immediately. So I did and he said he could see us early before the regular day started so we have an 8:30 appointment at UPenn. He asked if we had any films we could bring and I told him I had already made (or Amber did) a complete set of all the CDs with images on them from pre-op on 5/12 to the latest CT on Wednesday 6/24. (Alan and I drove to JFK yesterday in a fierce thunderstorm to pickup the CD from the 6/19 CT scan which we were missing.) So we are on our way to Philly for the eye appointment at UPenn and then to the Oncologist appointment at the Dr.'s office near Pennsylvania Hospital. Thanks for your support! Love, Andrew

Alan went into surgery a little before 10pm this evening. The doctors decided to do the procedure on both of his eyes. Lots of love to Alan and the Sweetons!

The procedure that the doctors are doing involves making small cuts on the optic nerve to relieve pressure and swelling. Forgot to mention that in the previous post...

12:45 AM - Alan is out of surgery, we are waiting for him to come out of post-op so we can see him. The surgeon says the procedure itself was successfully performed but he only saw a dribble of fluid when slitting the sheath around the nerve, where if pressure was the issue, he would have expected to see a spurt. So he is not very hopeful for the long term outcome. He said Alan's right eye was still at least light sensing post-op. He wonders if some of the tumor cells are the actual issue and if radiation and chemo might help, but again they might simply make it worse as the optic nerves may be hanging on by a very tentative thread. Basically he said 6 months down the road we will know for sure the longterm outcome for his sight, but for now Alan is quite simply blind and disabled and we need to get on with the business of treating the cancer to save his life. He's on massive steroids and antibiotics. Tomorrow he will have an MRI (and a check by the local neuro-surgeons that it doesn't screw up the shunt setting) and then the various Doctors will talk about the new schedule for radiation and chemo. 1:30 AM - I've got a blanket on Ginny and she attempts to doze amidst the snores of the family of three who share the dingy waiting room with us as we wait to hopefully see Alan before daybreak. I look back to early May and wonder how a possibility of blindness was not even on anyone's radar as a concern. Now it looks like a fact of Alan's new life. Could this have been prevented? Was there something I was supposed to do? I'm finding this all suddenly so very hard. I can't help but grieve at the loss of my doubles and movie-going partner. I mourn the fact he'll never go Pro. I mourn the courses he'll never see, the tournaments he'll never play in, and the movies he'll only ever hear. My heart is breaking as I allow myself to sit here and type these thoughts I couldn't possibly speak out loud. But miracles do happen, right? 2:00 AM - Still waiting for Alan to get out of recovery. 2:15 AM - Still waiting. 2:30 AM - Still waiting. 2:35 AM - I was wandering outside the waiting room and saw them wheel Alan down a hallway so I followed them to G201 and went back and got Ginny. He said his eyes hurt and he doesn't think he got sick in Recovery. 3:00 AM - OK, off to home for a few hours sleep. Sleep tight my baby boy. Thanks as always for your thoughts and prayers, Andrew

Alan's sight is no worse for the surgery...that's some good news. The doctor's seem to say that it's now a waiting game...no conclusions for about 6 months. Alan seemed pretty tired today, but he was able to crack a few jokes when B.O.B. and I were at the hospital today. Please keep the prayers coming.

We got home at 4 AM, in bed at 4:20 and the mean nasty alarm went off at 6AM. We arrived back at the hospital just in time for Alan to be wheeled through the tunnels from the hospital over to the Eye Institute. After exams etc. the Dr stated he was very pleased that Alan's limited sight seemed unchanged. He said he had had a sleepless night worrying that the surgery might have made Alan completely blind. He stated that the surgery plus the massive steroids was the maximum treatment that Alan could receive and there is nothing else that can be done for his eyesight. Now we are in "wait and see" mode and the next six months will determine if Alan's sight improves, worsens, or stays the same. Alan looks like he was in a prize fight with massively swollen bloody eyelids. He's in a bit of pain and in somewhat resigned spirits, but he's eating well. Due to the massive steroids (12 mg every 6 hours) that lower his immunity the doctor is worried about complications with the shunt so Alan will remain in the hospital until Thursday or maybe Friday. He's also on heavy antibiotics. He is slated for some further imaging as well. BOB and Kit visited this afternoon and Gina was headed back over (she was there with us last night for about 4 hours in pre-op) to visit after work. While at the hospital, Amber called to say that Hobbes (the giant orange tabby) was breathing funny so we left the hospital at about 4PM, got home at 5pm, and I'm sitting in the Vets parking lot typing this while Ginny and Amber are inside with the cat. On the way here I said in my best Arnold voice - "It's not a Tuma" (Sorry - another movie reference - Kindergarten Cop) So the cat has Cardiomyopathy (sp?) and has had two shots and will need diuretic pills for the rest of his life. That will be a fun task every day. The entire visit including shots and meds was $55.41 - a far cry from the statement we got today for Alan's charges just for May 12th when the tumor was removed at Pennsylvania Hospital - $182,790 - Yikes !!! OK, off to bed before I fall over. Thank you for your well wishes, thoughts, and prayers. I was pretty down last night and the replies of sharing, caring, and love were tremendous. I truley appreciate the perspective adjustment and priority setting from dear colleagues and friends. Thank you all. God Bless, Andrew

Alan is back at home, and also made it out to the disc golf course today! The guys made it through 7 holes before the muggy, buggy, humid air changed to thunderstorms. Ahhh....Jersey in the summer! Hope everyone enjoyed their 4th of July, and glad Alan and the Sweetons got to spend it at home!

Friday: Happy 4th! A lot of lazing around occurred. I slept in until something like 8AM - what a lazy bum! Walmart is wide-open but sure enough the pharmacy is closed. Thankfully we have enough various bits of Decodron (steroid) leftover from previous scrips to carry Alan over to tomorrow. His new tapering schedule will take him to next Saturday. While at Walmart I picked up a cassette tape player so he can use some of the books-on-tape people have given him. Saturday: Eric Robbins came over and we took Alan up to Liberty Corner to play. We only played six holes and Alan was done. The humidity is simply off the charts. He said that he couldn't see as much as the last time (it was bright and sunny last time) and as good as Eric and I were, BOB was much better at setting him up on the tee and describing the shot he needed to make. On the way home we stopped and picked up Alan's prescriptions at Walmart - $282 - ouch! Sun: Alan and I went to the Rutgers course to lend a hand to BOB and Kit at the Jersey Jam warmup. It was only about 80 degrees but the humidity was off the charts and you could see the air. We sat under a tent at tournament central and an occasional breeze was a blessing. We could see four holes from our vantage point and I gave Alan the play-by-play. A drop-out would have left Kit and Hope to play by themselves in the second round so I borrowed 5 discs and played with the ladies. I didn't do that bad considering the lack of my own discs. The Gateway Magic that Mac lent me was actually a pretty nice upshot disc but I really missed my pro-line Rhyno for putting. It got a bit boring without me to tell him what was going on so Alan called his mom and Ginny came and picked him up. After the tourney the McGinley family, JB, Missy, and niece Caitlyn (who didn't go to Maine) came over and we ate an egregious amount of pork roll, hamburgers, hotdogs, and cheddarwursts of the grill. Afterwards a bunch of us jumped in the pool. Alan was pleased that Gina stopped to visit on her long drive back from Pittsburgh where she had attended a wedding. Monday: Day 1 of Alan's Radiation and Chemo - If there are no interruptions he will finish on Ginny's birthday on August 20th. Maybe we'll take a few days at the shore afterwards. While typing this update in the waiting room the nurse came in to warn me and the waiting patients that there would be a delay as they were having a problem "setting the field parameter" on the machine but they were on the phone with technical support. When Alan came out he reported that they had to reboot the machine and one of the radiation techs was swearing at Microsoft. I kidded that it was like he was back at work. OK, so Radiation treatment #1 is done. Tonight Alan gets his first dose of Chemo. Off we go back home to wait and see if nausea will be an issue. Thanks all, we hope the US folks had a great holiday weekend. God Bless, Andrew

Hi all, John, Liam, JB, Missy, and Todd all came out and helped finish a cement job for the new C-pin for hole #9 at Tyler today. Alan and I had mixed and set 640 pounds of cement with rebar for the base back in April, but then the tumor happened. Today we put another 560 pounds of cement into a pedestal form made out of an inverted 36 gallon rubbermaid trash barrel and now its time to just sit and wait on the cement to dry and make sure none of the knuckleheads mess with it. I'll wait to dark to leave and it should be fine overnight unless it's the whitetail deer that are the vandals. Its reasonably cool under the tree canopy and the breezes feel good. I brought a folding chair, a jug of ice water, cigars, and a book; so I'm pretty much on vacation. Before starting the latest adventures of the Corleone family (Godfather's Revenge) I figured it was time to get another update out to you all. (Have blackberry - will write.) Alan is at home enjoying the pool after church, and I understand that Gina is over. Alan has now had 5 radiation treatments (M-F) and last night was his 6th set of chemo pills. So far he has had no issues with nausea so it looks like he is in the 90 percent of people that tolerate the Temodar well. The radiation has a cumulative effect so we shall have to wait and see. The steroid taper finished last night so we shall see how that affects his appetite. Hopefully the voracious appetite from the steroids will only drop-off to a regular appetite, as one of the other possible side-effects of the chemo is appetite loss. It probably won't be an issue; after all, he is Alan, son-of-Big-Dog. The next five days of radiation start in the morning, and on Wednesday we have a follow-up visit in Newark with the Neuro-opthamologist that did the Optic Nerve Fenestration surgery. Alan's Army wristbands are selling like hotcakes which is good as Ginny noted yesterday that Alan's insurance has already hit the annual limits, so the rest will be out-of-pocket. Gina has a fundraiser pasta dinner in the planing stages as well. It will be at the Montgomery Evangelical Free Church in Belle Mead, NJ on August 7th. More details to follow. Thank you all for your continued support. God Bless, Andrew

Huh, #50 - wow, some kind of a milestone. Glad to report I have not developed "Blackberry thumb" yet. Alan has now had 10 of his 33 morning radiation treatments and 13 evenings of chemo. He's a bit tired, but otherwise OK. Thankfully nausea is still not an issue and 7 days after his last steroids he still has a very healthy appetite - we try not to get our fingers, or the cats, to close - ravenous AND blind are a bad combination. We visited the Neuro-Opthamologist in Newark Wednesday afternoon. He thinks Alan's sight may be slightly better. Alan reports that some days seem better than others and some of the "cloudiness" may have lifted, but hard to tell. The left eye remains non-light sensing and his right eye is still 20/400. If he carefully moves a hand-held eye chart card before his right eye he can make out the top two lines but he can't read an eye chart on the wall at all. The doc asked Alan if he was "psychologically ready" to explore low-vision measures to see what could be done about him making the best use out of what eyesight he has. Alan's reply was "sure." We talked about that on the way home in the car and Alan's said "Am I psychologically ready? What the heck does that mean? If it means am I hoping and praying that my eyes get better but want to be able to do the best I can with what I've got, then I guess that's a yes.". So we have an appointment for a week from Monday back in Newark with a low-vision specialist. Yesterday morning we went to Tyler with John McGinley and took the form off the Hole 9 C-pin. We moved the basket to the new pin position and it looks awesome! I had tried to align it so that from the tee pad it would be fully visible and framed by some trees, and it came out perfect. We played the hole and Alan was the first one to putt out on it. We were starving, having neglected breakfast to get to the park, and were on our way to Slack's Hoagie Shack for a cheesesteak (Best in Bucks County) when while stopped at the four-way stop in the park a lady pulled up in a car and told John that "the Amish were having a pig roast back behind Wendys" so we went over there and sure enough there is a Pennsylvania Dutch Farmers Market behind Wendys and the Amish were selling roast pig sandwiches. About then Rex called and said he'd meet us so he came over and we had some excellent roast pig and ice cream. When we got home Alan told Ginny "You'll never guess what we did after Tyler Park - the most random thing ever - we went to an Amish Pig Roast!" Gina came over in the afternoon and she, Alan, Amber, and Ginny spent the afternoon at Mom and Pa's at the pool. I opted to stay in the AC and get some work done. Amber ended up going with cousin Caitlyn to eat dinner at a house-sitting job, while Alan and Gina went out to Contes for some of Princeton's best pizza. Since everyone bailed on the fresh jersey corn and marinated chicken thighs, we decided to hold them over to Sunday night and Ginny and I went to the Tiger's Tale for a nice steak and scallop dinner - just the two of us. It was a real nice change from the past two-and-a-half months worth of "date nights" eating fast food together on the way to or from a hospital. (Note: a bunch of folks from the community and church have brought food by the house, so we have had some very good meals - thanks all!) BT - A bunch of plans for fundraising for Alan are in full swing, I will include these with info on the website in another update later today. Thanks, Andrew
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I feel a little strange typing up an update about money, but Alan needs it and he can�t type right now, so, so be it.



We do very much appreciate all the support we have received so far from the Army, and if you can help Alan financially too, that is great, but if you can�t, please note that we continue to ask for prayers for Alan above all else and appreciate them greatly.



Many thanks to our workmate Larry Squitieri for donating the hosting, his talent, and his spare time to put together a website for Alan�s Army! Larry�s done a fantastic job so for all the Alan�s Army updates in one central place go to:



http://www.alansarmy.org/









Alan�s Army Wristbands � wear them with pride!







Alan�s Army wristbands are being given away with any donation of $20 or more to help Alan with his medical expenses.



You may get them personally from a member of Alan�s Army at:



Dragan Disc Golf Course, Auburn, ME � Pro Shop (Bob Enman or staff)



Enman Field Disc Golf Courses, Brunswick, ME � Pro Shop (Bob Enman or staff)



GfK Custom Research, Princeton, NJ � Deenu Shaik, Joe Venanzi



Montgomery Evangelical Free Church, Belle Mead, NJ � Shelley Mathisen



Rutgers Disc Golf Course, New Brunswick, NJ � BOB Graham



Pleasant Hill Disc Golf Course, Scarborough, ME � Pro Shop (Bob Enman or staff)



Sedgley Woods Disc Golf Course, Philadelphia, PA � Becky Sonnheim



Tyler Disc Golf Course, Newtown, PA � John Birkrem, John McGinley



Or you may get them on-line from our friends at the MaineDiscGolf.com Pro Shop at: http://www.mainediscgolf.com/store/inde ... ductId=119



Thanks for your support!





Benefit Dinner and Silent Auction � August 7, 2008



A Benefit Dinner and Silent Auction will be held at the Montgomery Evangelical Free Church on Thursday, August 7th -- see the attached flyer.



To volunteer to help at the dinner or donate a food item for the dinner, please call Shelley Mathisen at 908-874-4634 or email [email protected]



Here is a note from Gina concerning the Silent Auction:



Dear All You Amazing Members of Alan's Army,



Hi, my name is Gina Albright, and I am one of Alan's friends who are coordinating the pasta benefit dinner to be held on Thursday Aug. 7, 2008 at Montgomery Evangelical Free Church. In addition to the dinner, I thought it would be great to raise some extra funds by having a silent auction! However, I need YOUR help! I am recruiting any volunteers to make baskets for the auction....They can be whatever you think of (gas card, coffee basket, movie basket, summer sun, picnic supplies, wine basket, lottery scratch offs, body lotions/bath supplies, and the list goes on!) If interested, please email or call me so I can begin to organize this part of the event!!

email: [email protected]

cell: 570-561-5121



Looking forward to hearing from you soon!!



Thank you for your time and consideration, Gina





To purchase tickets in advance see Shelley Mathisen at the Montgomery Evangelical Free Church, Belle Mead, NJ or you may get them on-line from our friends at the MaineDiscGolf.com Pro Shop at: http://www.mainediscgolf.com/store/inde ... ductId=123



Thanks to everyone for your support!



God Bless,



Andrew

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I have had a bunch of queries already from people that would like to give Alan a donation directly without worrying about wristbands etc.



A donation can be made on-line directly through PayPal at: [email protected]



Or a check can be made out to Alan Sweeton and mailed to:



Alan Sweeton

196 Sunset Rd.

Skillman, NJ 08558



Thank you all for your support.



Today Alan had radiation treatment #12 of 33 and the doctor said his blood test shows his white blood cell count has dropped back into the normal range at 6.5. His previous counts while on steroids were 18 and 13. The normal range is 4.5-10.5



Alan has a nausea prescription for something called Compazine which he can take every six hours as necessary. At the bidding of a disc golf friend who went through the whole chemo routine himself (We thank God he is doing well now) we were preemptively taking one pill before radiation and another with chemo each night. The doctor suggested today that we start skipping the morning one and see what happens. So tomorrow there will be one less pill to take in the morning. We shall see how it goes.



On a sad note, our giant orange cat, Hobbes, died last night. Unfortunately Amber was away at a friend�s house but Hobbes passed with Ginny and I petting him and saying his name. Hobbes was a great old thing who�s favorite thing was to rub his head against a person�s bare toes. He really had a toe fetish. We recall when Amber was just a toddler and she�d get up in the middle of the night to use the bathroom and we�d hear her giggling as Hobbes wouldn�t miss his nighttime fix of rubbing his face on her little feet as she sat on the toilet. Take care big guy; enjoy your place in Cat Heaven.



I�ve often wondered why God allows us to love pets so much and grieve so hard at their passing since their life spans are so much shorter than our own. Maybe it helps us prepare for the loss of people we care for.



Ah well, just a quick note, back to work!



God Bless,



Andrew

alansarmy.org

Please don't forget that tonight is the Pasta Dinner & silent auction being held at Montgomery Evangelical Free Church in Belle Mead, NJ to benefit Alan's medical fund!
it runs from 4-9 and hopefully anyone in the area can make a point to come out and eat well and help benefit one of our own!

also,

Typically we have our league night at Tyler State Park in Newtown, PA on Wed. nights, but due to Worlds happening this week, we are not having our typical league night.
Instead, there will be random draw doubles.
This will be a 50/50 event - cost is $10.00 to enter - $5.00 goes to the Alan Sweeton Medical Fund and the other $5.00 will go to payout.
reg. from 4:30-5:00 and tee off will be at 5:15.
layout will be holes 1-4 and 14-27 with mixed pin placements - par is 58.