Alan’s Army

Hi all,

I hope you enjoyed the photos.  Sorry it took so long to send them.  I’m usually typing the update on my BB while at the hospital, sitting in traffic, and climbing into bed.

Getting the photos uploaded onto the PC, sorted, saved with names and attached to the email is usually just a bit more effort than I have energy for.

Today was our club’s big amateur disc golf tournament.  I went early to help out and then left during the second round to get to Edison to see Alan.  It was great to have so many members of our disc golf family stop to give their regards and support for Alan.

I was however quite dismayed that a number of dear friends were exhibiting the aftermath of encountering poison ivy during the “assault” on the Sweeton compound last weekend.  Thank you all for the wonderful job you did and your sacrifices to help us.  You each deserve a purple heart for your injuries in “combat.”

Alan’s rash continues to be a mystery as they try some other kind of cream now.

Today Alan was much like he had been near the end of the stay in Philly.  More energy, kidding around, eating everything within reach, and saying he wants to come home.

God Bless,

Andrew

Hello Army!

The PT folks have Alan taking a shower each morning now before breakfast. Today he also did a bunch of work on stairs.

BOB lives very close and brought walkie-talkies last night in the hope that he and Alan could talk from his house but the mileage rating doesn’t seem to be accurate.  Apparently they do work from the 7-11 down the road so BOB can check and see if Alan needs anything in particular when he’s on his way over.

The food at JFK is a far cry from the very good food served at Pennsylvania hospital, so Alan is no longer ordering dinner and we are bringing it to him from outside or from the very good grille downstairs.  Pork Roll and Cheese and Mozzarella Sticks seem to be his favorite.  He had them tonight along with a Birch Beer that BOB left him in a little cooler, and after a huge Birch beer Burp he declared it excellent!

Alan told us a story about his speech therapy session.  Apparently they do a lot of cognitive testing and memory games.  Today they asked him to list as many fruits as possible in a minute.  He said he named a bunch and then momentarily drew a blank so he threw in “Elton John” and then continued on.  Apparently the PT folks were in hysterics. 

We took Alan outside today and took a look at the hot stamp discs that arrived for tomorrow’s tournament as well as the 2008 USDGC ROCs we ordered that arrived today (thanks Jonathan!)

Alan’s only taking regular Tylenol for his headache now and they changed the anti-seizure meds in the hope his rash would clear up.  The current plan is that he will be released next Wed or Thursday.  On Tuesday the 10th we have appointments with the surgeon, radiologist, and oncologist in Philadelphia.  Normally we would vacation in Maine for two weeks starting the last weekend in June and I asked the Surgeon’s PA about that today.  He said that it would be the perfect thing for Alan, but it would depend on the start of the radiation schedule – we’ll find out on the 10th.

I’ve finally attached a bunch of photos, sorry for the delay.

God Bless all,

Andrew

Unfortunately Alan gagged on some pills this morning and then threw up.  But he since seems OK.

He has had a rash on his torso since Philly and they decided today that it is from the Dilantin (anti-seizure drug.) They are trying Benadryl cream to make it better. Thankfully the rash doesn’t itch.  They also decided today that they will keep Alan at JFK for another week.

Some more staples were removed today and Alan also had a shower during occupational therapy.

Tonight, two separate opthamology folks did a bunch of a tests on Alan.  We have not heard any specific results or therapy plans yet but it was very obvious during the tests that Alan’s left eye is extremely limited seeing only something less than a foot away and directly in front.

Erick Simonds, BOB Graham, and Stephen Caffery visited Alan today.  Talk about Alan throwing up breakfast prompted BOB to ask “Well, did you order the bulemic special?”  Alan said, “You know, I AM bulemic, I just forget to throw up.”

Thanks all and God Bless,

Andrew

Sorry - again the falling asleep problem Tuesday night, and then lots of work today.

Yesterday (Tuesday) was a pretty good day for Alan.  The pain meds are working so his head doesn’t feel too bad.  He had a bunch of therapy sessions which really tuckered him out so hopefully he will sleep better as well.

Alan desperately wants to be released on Friday so he can just “hang out” at the club’s big disc golf tourney this weekend - The Great Eastern Amateur Cup.  I would love that for him, but I think it is really unlikely.

Ginny and I raced up to JFK from work to meet with the case worker at 4pm Tue afternoon. She pretty much had zero information except “Alan is a real nice young man” — which we kinda already knew.  Apparently the rounds schedule got messed up by the holiday so we have to wait on the evaluation.  She promised to call me on Wednesday.

Alan is eating much better again, he ate every scrap of dinner.  He also had a nice visit with Andy Beth ______?  a friend from Liberty University who now lives in Philly,

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Wednesday

Long workday in prep for a presentation in NYC tomorrow.

I did talk to the surgeon’s PA who called me today and said they finally got the new CT scan from JFK and reviewed it today.  They noted fluid but not a dangerous amount.  He said Alan’s shunt can be programmed to drain a bit more and he will check to see if that can be done at JFK.   Traffic is horrible if I don’t leave the office by 3:30.   While stuck in traffic I called Ginny and told her the case worker never called as promised and to ask the nurses.  They checked and she had forgotten about us and passed along that rounds didn’t happen anyway - AAAARRRGGHHHH!!!!!

I didn’t arrive at JFK until 5:45 and we need to leave by 6:20 to make it back in time for Amber’s Band Concert.

When I got there the Keith and Melissa Arnesen were visiting again - yea, I didn’t miss them this time!

The therapists tuckered Alan out again today with therapy, but he said his head felt pretty good.  They took him off the Delaudid and put him on vitamins and Topomax, a migraine and anti-seizure med.
Well, far too short a visit with Alan.

We were late arriving at the concert, but thankfully the Symphonic Band was just taking the stage so we didn’t miss a single note from somebody special’s French Horn.  The concert was great but some of the Wind Ensemble’s (last band to play) quieter movements solicited nudges from Ginny so I wouldn’t fall asleep and snore.

We arrived home at about 9:15 and Uncle Dan had stopped and fixed the flat on the wheel barrow - thanks Dan!  Now I guess I need to order that mulch, no excuses!

Mait and Bernice (Ginny’s parents) pulled in having returned from visiting Alan and reported he was whupped and didn’t eat much dinner.  I’ll have to have a talk with him about that on our 7:30am call. (Have to get him before the PT folks do at 8am.)

Speaking of AM, I have to be up before 5 to get to the city and I’m on the Blackberry as usual so sorry, but no pictures tonight.  I promise to send a bunch soon, including some good before and after haircut shots!

As always, thanks for your support and  prayers!

God Bless,

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.

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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

Too bad no one listens to Big Dog.  The groundhog had a feast last night neatly nipping off all the just-planted flowers in the side flower bed.  Oh well, once I find time to “take care of” the groundhog, they will grow back.  The place looked gorgeous in the morning sunlight this morning - thanks everyone!

I spoke to Alan a little after 9am and he said his head felt better today.  He’s looking forward to visits from his Great-Aunt Janet and Great-Uncle David, Grandy (my mom), and Aunt Barbara and Uncle Brian.   We will also take Angel and Amber back today, as well as a pair of clippers to cut the rest of his hair off and trim his beard.

I cut a piece of carpet this morning to fit the back of the jeep for Angel and he hopped in and was ready to go to see Alan.  Sorry Pup, you have to wait until 1pm!

Tomorrow is a holiday so visiting hours are the same as weekend hours - 1-8:30pm - yeah!

God Bless,

Andrew

More photos later.

Well, today was a heck of a day!

I’ll send more photos tomorrow.

Thanks all for your support!

Andrew

Another tough day as Alan continued to have a bad headache.  He didn’t do much therapy and didn’t eat anything for breakfast or lunch simply because his head hurt.  Thankfully the anti-nausea meds seem to be working fine so drinking isn’t a problem.

They increased the steroids that Alan had been being weaned off and tried a different pain medication.

The nurse checked the computer for us and said that the Dr. noted that the CT scans showed no change, we also asked her to check on the Dr. order allowing Alan to go outside.

Disc Golf friends Bob Graham and Scot Witteman both visited today and workmate  Thomas Hornedo and family visited as well.  Alan was glad to see them all even if he wasn’t up to much more than laying in bed and talking a little bit.

We got him to eat a little at about 8:25 and left after official hours at about 8:50 with him peaceful with his ipod playing.

We checked on the way out on the Dr. order and the nurse said his book did have a notation that he could go outside with his parents for an hour.  I snuck back to the room to tell him that Angel would visit tomorrow and also verified that yes, Amber was coming too.  He was very happy and I hope he’s resting well.

The 30 minute drive home is a blessing compared to the hour from Philly.

Thanks all, sorry - no pictures yet, I got them off the camera onto the PC, but this email is on the blackberry being sent as my head hits the pillow.  I’ll do photos this weekend - I promise.

Thanks and all our love,

Andrew