Alan’s Army

Sorry for no update yesterday - too busy!

Lots of “extras” yesterday.  They took pictures of Alan’s retinas, other visual field tests, and took a bunch of X-rays of his shunt.  Other than that, a standard day of PT etc. 

Alan had a good time visiting with John Shields, a friend from our NYC office, who arrived while we were outside and came upstairs with us while we had dinner with Alan.  After dinner BOB arrived and Ginny and I took off and let BOB tuck Alan in for the night.

—– “We interrupt this Alan’s Army Update for a “Groundhog Report” —–

Many thanks to Sue Langhans and Deenu Shaik for bringing by some flowerbed treatment designed to repel deer, rabbits, and groundhogs.  Interestingly enough, the number one active ingredient is Oil of Cinnamon so the flowerbed smells kinda like Valentine’s Day cinnamon hots.  Hopefully this will prevent more flower damage while I eradicate the little beasts.  (Since we have an 1830 something farmhouse with a real rock foundation we have no choice, we need to get rid of them.)

As reported before, Uncle Brian had provided a Have-a-Heart trap.  I originally baited it with half a pear and placed it near the groundhog track running between the forsythia bush and the hole in the flower bed leading under the front porch.  After several days of no action, (other than Amber seeing a fox sniffing at the trap one morning) I decided to take Linda Rooney’s advice and replaced the pear half with a quartered apple.  I also moved the trap around to the back of the forsythias figuring if it was less out in the open the little buggers might be more likely to “trust the fruit.”  Well, the next morning the trap was sprung, but no groundhog and the apples were untouched.  My theory is that it may have been the huge groundhog (no really, it’s a very big groundhog - looks more like a Corgy than a sod-puppy) and it sprung the trap while it’s butt was still hanging out and it was able to back out of the trap.

So I made sure the apples were situated right against the end wall and reset the trap.  I forgot to check it last night but this morning we had a captive!  Unfortunately it was a pint-sized young groundhog - probably only about 5 lbs.  Well, despite all my thoughts of various ways to dispatch a groundhog once I caught one, I decided that I couldn’t bring myself to kill a little one whose eyes weren’t quite so beady, so I dropped it off at the Sourlands Mountain Preserve.  The last I saw it was sitting in the middle of an acre of grass not making any particular move to head for cover in the woods.  The trap is re-set with fresh apple quarters - hopefully we can catch a big groundhog soon.

—– End of Groundhog Report —–

So today (6/5) we met with a case worker from the NJ Commission on the Blind and Visually Impaired.  She actually had some solid information for us.  Alan’s sight with his right eye is rated at 20/400 and his sight with his left eye is rated only “light perceptive.”  This makes him legally blind as the NJ minimum benchmarks are 20/70 in the good eye for “Visually Impaired” and 20/200 in the good eye for “Legally Blind.”   This designation  opens up a host of services for Alan that can be very helpful.  They will send a number of folks to the house to help teach him mobility skills as well as living skills (cooking, etc.)  Once a doctor clears him to work, and if the eyesight were still an issue, they have intensive work skill courses and services for outfitting a PC with aids etc.

Alan’s quip was “Wow, now that I’m legally blind I can have an affair and become the NY State Governor!”

We will hear more from the Commission next week, hopefully this won’t be a long term thing anyway if his sight improves.

So anyway, Alan may now NOT come home tomorrow.  The substitute case worker called me at about 3pm and said she had setup the “Family meeting” (the one promised over a week ago) with the doctor and therapists for 4pm Friday.  I told her that we expected to be home by that time and she said her understanding was that the  doctor wanted to keep him to next week.  I said “Why?” and  after a lot of back and forth without any compelling reason to keep him she said she needed to speak to the doctor.  She called back and said “because he really needs 24 hour care” and I said “Yes, that’s what we have been training and preparing for” and  “all of his therapists are very happy with him and had nothing negative to say about him coming home tomorrow.” and “regardless, he MUST go to Philly on Tuesday.”  To which she said “OK, I guess he can go home tomorrow as planned.”

So the latest salvo was a phone call from the doctor at around 7pm who said that the radiologist wants to do a nuclear study before an adjustment to the shunt is done.  Oddly enough the ability to do this is for some reason unavailable tomorrow, so Alan will need to stay here until Monday.

Ginny and I can’t help but look at all the empty beds on the BTU and wonder if they really need to keep Alan to help pay the overhead.  The doctor said he will speak to Alan’s surgeon tomorrow to see if they think the study should be done or if further imaging and shunt adjustments can wait until he sees them in Philly on Tuesday.  He said he will call us in the morning.  Any bets on the likely content of that call?  If he says Monday for the test, I will ask him what time and that we will happily drive Alan up for the test.  We just don’t see a benefit of Alan laying in that bed for two more full days when there is no therapy sessions or anything.  We can give him pills, we can feed him, we can escort him to the bathroom.

So, on to happier info - disc golf friends Nick Schneider and Adam Vanderslice came up from Philly to visit Alan this evening.  They had a great time talking disc golf and courses they had all played.  Alan joked that he and Adam could pass notes to one another in Ancient Greek and Nick wouldn’t know what was going on. (Alan and Adam had Greek class together and were both graders for the greek professor at Liberty University.)

So, please pray that the doctor makes decisions based on what is best for Alan not a P & L statement.  Likewise, pray that we don’t assume ulterior motives and accept that which is best for Alan also.  If it means he needs to stay - fine, but if he comes home sooner, so much the better.  Thanks!

Love,

Big Dog

What an unbelievable day.

All the bad stuff is OK now though because Alan is home!!!!!!

Details to follow.

I’m an idiot.  I knew if I started listing visitors that I would leave someone out eventually.  Well, during all the hubbub with mulch, groundhogs, etc. on Sunday I forgot to mention that Aunt Renee had visited Alan on Sunday and he was thrilled to see her.   Renee and Ritchie Sorenson were neighbors of Aunt Nancy and Uncle David when they lived in South Plainfield but have become the fourth Daughter and Son-in-law in our extended family.  They, and their sons Andrew and Roy, are an integral part of the family and are part of the 20+ family members that go on vacation in Maine together each year. 

Throughout his recovery we have been picking up food for Alan at the hospital cafeteria (its better than the standard patient fare.)  Typically they put a scoop of potato salad into the styrofoam bin along with the sandwich.  Alan has steadfastly refused to even try it saying “It’s not Renee’s” every time.  Smart kid - I ate it tonight and it was pretty awful.

Today we had a meeting with the case worker and all of Alan’s therapists.  Basically Alan surrounded by seven women.  (FYI -apparently the one “student” therapist has already solicited Alan’s email address to visit with him when he is home.)  They are all very pleased with Alan’s progress and he will be released to come home on Friday.  His sight is really his limiting factor at this point.  Tomorrow we have family sessions with the therapists to go over things like getting Alan in and out of a car, wheelchair, walker, stairs, shower, etc.

The case worker had already written a referral to Bancroft Neuro-Rehab in Plainsboro for out-patient visits but after today’s meeting she realized that Alan doesn’t need any cognitive work at all, so she is going to look into Princeton Medical Center which is very close to both the office and home and would allow me to easily take Alan during my lunch hour.

The case worker has also setup a meeting with the Commission for the Visually Impaired for Thursday.  They apparently have lots of advice and resources that should be helpful for Alan.

Today they also did another CT scan to see how things are doing in Alan’s noggin.

We went outside this evening and enjoyed the breeze and Joe Bakter, Kurt Kusenko, Pete Toth, and Joe Venanzi all visited from work.  Outside time was up shortly after they arrived so we all went upstairs and gathered around a table in the hall and Ginny and I got sandwiches from the cafe and ate with Alan while the crew did their standard commentary and comedy routine.  Longtime Disc Golf buddy Eric Eichhorst showed up to visit and had so much fun with the crew he told us to let him know if we were doing any  hiring in Marketing.  Eric brought with him a helium get well balloon with a picture of a Barbie-esgue blonde on it that was a gift to Alan from another disc golf friend, Mike Miller.  Apparently Mike had said it was the only way he could “sneak a blonde up to Alan’s room.”

Alan had a great time with the boys and is really looking forward to coming home on Friday.  He and I are both very upset that we won’t be going to Maine this weekend with the crew from Tyler and Sedgley to play in the DDGC and then the special match play challenge between the Bucks County team and the Mainiacs team that Bob and I dreamed up last year.  It’s breaking our hearts to miss the inaugural year and more importantly to miss seeing our dear friends the Enmans, Connells, Gordy and Victor, as well as the rest of the crew at Dragan and Scarborough.

Oh well, we need to be realistic.  Neither Alan nor I would have the energy for the long drive and we need to spend the weekend adjusting the house to make life as easy as possible on Alan and ourselves.  I have a bunch of handles that will need mounting at steps, the tub etc. 
Hopefully the radiation treatment schedule will allow for at least one of our weeks in Maine at the end of June.  If not, we will need to look towards when the radiation treatments end, perhaps in September.

We are still waiting to hear on the second pathology report about the tumor chromosomes.  Perhaps they will know when we return to Philly on the 10th.

In the mean time, thanks for your prayers and continued support - they are certainly felt and most appreciated.

Love,

Big Dog

BOB,

But of course!

I know the Alan’s Army updates are reaching hundreds, perhaps thousands at this point including many church prayer chains.  I am quite sure that Peggy will be lifted up in short order.  Please keep us posted.

Thanks and God Bless,

Big Dog

hey there Big Dog and friends,
hear’s one of the other people in my life with brain cancer that needs your prayers too.
This note is from my mom and I know you don’t know her but I hope you can include Peggy in your prayers.
Thanks and peace,
BOB
 Hi,
 Peggy is my daughter’s best friend. She is 32 yrs old and just graduated as a Medical Assistant in the state of Washington. Her picture is enclosed.  Peggy is a single mom with two sons, AJ who is 11 and Avery who is 9. Peggy home schooled the boys until two years ago when she went to work.  While studying for her Medical Assistant exams Peggy had migraines and the pain brought her to the emergency room one night in mid February. Peggy was told she had a glioblastoma multiforme tumor, which is stage 4 brain cancer.  The 1st crainiotomy was less than 24 hours later. Two weeks later Peggy began 6 weeks of chemo & radiation.   The follow up MRI on May 12th, showed that the tumor did not respond to treatment. In fact it grew much larger than it was originally and spread to an additional part of her brain.
 
 Peggy’s.2nd surgery was May 16th. She did sooo well, and was released Monday, the 19th of May, only to be brought back into the hospital on the 20th with hydroencephalitis (water on the brain). This was treated and she was released on Saturday May 24th….within a few hours of being home, she ran an extremely high fever and had to return to the ER……She now is battling Staff infection in her bone (they did a bone flap on Tues/Wed.) as well as a secondary infection.  
 Please join us in prayer for Peggy and for the small brave circle of friends (including my daughter Heather) who are nursing her through this terribly hard time.
 Peggy is a strong woman with an amazing sense of humor as she battles this disease but she needs Jesus help. Peggy’s friends have asked that we pray for a miracle and complete recovery.  I want to add that we also pray that Peggy will receive the gift of faith and with it the peace that surpasses human understanding.     
  
 Thanks, I will keep you posted.
 Pat

Hi all!

A big day today for Alan. His rehab doctor visited him this morning and told him that the conclusion from Thursday night’s examinations by the opthomologist and neuro-opthomologist is that his optic nerve is swollen. They believe that once the swelling abates, his vision will improve.  This is certainly something we will pray for.

This afternoon Alan went on a grand adventure. His various therapists took him outside in his wheelchair, put him in a car and drove to Dunkin’ Donuts where they had him walk into Dunkin’ Donuts and order himself a strawberry-banana smoothie.

Alan also had a substitute speech therapist today. She told him that the half-hour they were together was her favorite half-hour of her day so far. Alan then quipped, “Of course, at that time it was only 10:30am.”

A sleeper-sofa we ordered back on March 8th is finally arriving tomorrow, and since I need brothers-in-law help to move the old one into the barn, I decided to make a short trip to visit Alan tonight.  I drove Amber and Angel to Edison and we spent Alan’s one-hour “away” time outside. Thankfully the earlier Dunkin’ Donuts run didn’t count against us.

Just before our time to leave, BOB showed up to visit and Ginny reported that Todd Cottrell and Ali Wilkinson also visited with Alan tonight.

Good night all, sleep tight, my head is arching towards the pillow.

Andrew

Sorry, fell asleep again.

Saturday night I went to bed thinking “If it’s sunny in the morning I will start making a dent in the five yards of mulch before going to the hospital.  But if it’s raining, I will start making a dent in Alan’s room in preparation for him coming home.”  So at 8am I was laying in bed trying to convince myself that I could fall back asleep (I can’t actually do that unless I’m sick) when the phone rang and it was Uncle Dan - “You up?  Are you doing the mulch?  I can be there in 20 minutes.”. Well that decided that.  Apparently Dan then called his girls at his ex’s to let them know he wouldn’t be at Sunday School if Nancy dropped them off at the church as usual. 

Dan and I got as far as two of the front yard trees mulched when in pulled Aunt Nancy with Dunkin Donuts and the girls, Emily and Sami. After racing into Amber’s room to wake her up, the girls pitched in on the mulch. With farm-girl Nancy cracking the whip, all five yards of mulch had been distributed and I had placed an order with Agway for a second five yard bale — all by 11 o’clock.  In the process we also filled in the groundhog hole under the porch.

During this time Uncle Brian walked over to deliver some pie that Elsie had made and I told him about the groundhog so he then brought over a have-a-heart trap.  Hearing that groundhogs like sweet things, Sami quickly baited the trap with a Jelly donut.

As we were getting ready to go to the hospital Ginny saw two groundhogs out in the backyard.

Alan had a busy day today with visitors.  Ginny and I got there about 1:30 and shortly thereafter Aunt Dari arrived with a huge box of Philly pretzels.  We nuked a bunch and ate them with spicy brown mustard - yumm!!!  The rest went to the nursing staff.  Then Uncle Dan arrived and after Dari took off we took Alan out for his “hour of freedom.”. While outside, Aunt Nancy arrived with Emily, Sami, and Amber (who had gone to their house after the mulching.)  Alan also took calls from Nan and Bob Enman, our dear friends in Maine.  Three high school friends next showed up - Evan Staats, Brian Bibbo, and Anthony Sitoy bringing along mozzarella sticks from Burger King.  (BTW - had I previously mentioned my discovery that the grille downstairs in the hospital actually has mozzarella sticks? - no more Macy’s runs for Uncle Dan and I!)

Amber and I ordered dinner at the grille and brought it up and we all ate at a table in the hallway outside Alan’s room.  While waiting at the grille, Kit arrived and helped carry the food upstairs.  She also had a disc that all the players at Saturday’s tournament had signed for Alan.  Alan had a great time laughing about shared high school/scouting anecdotes with the boys while eating. 

Alan is feeling pretty good and eating and drinking everything within reach.  His vision is his greatest frustration as it is what is limiting his abilities.  More than once he said “If it wasn’t for my vision I’d be home already.”

BOB couldn’t get out of work on time to visit so he called and spoke with Alan as we packed up to go.  Ginny, Amber, and I left at about 8:20 leaving Uncle Dan with a little bit of time for scripture and prayers with Alan.

We got home and there was five more yards of mulch on the tarp in the driveway, the hole under the porch was dug back out, and the trap had a captive Jelly doughnut.  I covered the mulch, spat in the hole, and re-baited the trap with half a pear.

The trap was still empty this morning — I suppose I should go buy some more petunias to bait it with.

Best to all and thanks for your continued support,

Andrew

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