Alan’s Army

Another great weekend!

Quick update, too busy with work for more. I’m actually at the park selling discs while typing for work. The laptop needs a charge in the truck so I figured I owed an update on Alan on the Blackberry.

On Friday, June 5th, we drove to Auburn, Maine for a weekend with our dear friends the Enmans and crew. A total of fifteen Bucks County Disc Golf Alliance members took the trip Down North to support our sister course/tournament. Saturday was the main event - The Dragan Disc Golf Championships - and Alan played all 36 holes. BOB Graham, was playing in the Pro division so Bob Enman, Gordy Adell, and Dave Townsend provided guide/caddy help for Alan while I attended to Tournament Director duties. The big winner for our group was Steve Agocs who won the Grandmaster Pro division, but everyone was a winner because all had a blast. Lots of folks camped on-site so we sat around and talked late into the night. Sunday was the second year of doubles match-play BCDGA vs Maine and once again Maine was victorious winning this year by a score of 5-4. A number of us went out that evening and saw UP, the new pixar movie, it was hysterical! We had a fantastic weekend, it was great seeing Alan play again, and we thank Bob, Nan, Kyle, Josh, and Gordy for their hospitality at Dragan Field.

On the way home, Alan, Stephen, BOB, and I stopped in Leicester, Ma. to visit our friends on Marshall Street - Jason Southwick at Pyramids and Steve Dodge and his family at Maple Hill - it was great catching up with them.

On the non-disc golf front, the Tuesday before the trip, Alan had a day-long assessment at the NJ Commission for the Blind in New Brunswick and he starts a two-week Mon-Fri training with them tomorrow. Luckily it is close to Ginny’s work so she can easily drop him off and pick him up each day. They will work with Alan on mobility, life, and technology skills. We are hopeful that the technology sessions will identify a good solution for Alan to allow him to get back on email and communicating directly with everyone. The hardware and software for the visually impaired can be extremely expensive so any help from the commission to target our purchases to what will work best will be great.

We are also blessed to have our old Boy Scout Troop reach out to help Alan. The troop had their annual strawberry festival fundraiser last weekend and the boys made an extra effort to raise funds for Alan for computer equipment. Imagine our shock and surprise when they told us they had raised $8,500.00! What a blessing! We are so thankful to Frank Mcveigh and the boys for their efforts.

I’ll write again with news about Alan’s training sessions.

God Bless,

Andrew

Wow! What a weekend! It turned out so much different than what I was expecting. I figured I’d attend the dinner for an event that Amber was participating in on Friday night, get up early on Saturday to help run a big disc golf tournament at Tyler State Park, and then simply crash on Sunday. Boy, did I not have a clue.Amber was participating in the American Cancer Society’s “Relay For Life”, an event where teams of walkers walk all through the night to raise funds for cancer research. The event also focuses on cancer survivors, so the entire family had been invited to a survivor’s dinner and “survivor’s lap” prior to the start of the fund-raising laps. Our dear friend, and workmate of mine, Nancy Raymond, was Amber’s team captain and her daughters (our nieces for all intensive purposes) Emily and Sami were also part of the team.The dinner was at 5pm Friday night, so I left work early, pulled into the driveway and as I was sitting in the jeep mentally checklisting (hmm, is that a verb?) what I needed to prepare for Saturday’s tournament, a van pulled into the driveway. At first I thought someone was picking up Amber, but then I realized I recognized the vehicle and it was in the wrong state. It turns out our dear friends Bob, Kyle, and Josh had arranged with Tournament Director John Birkrem to register for the tournament under fake names; had made sleeping and dinner arrangements through Amber with the entire Sweeton/Curtis/Van Nostrand/Van Liew clan, and had driven down from Maine as a surprise for Alan and I. What a fantastic start to the weekend!With them, Bob brought a big cooler of seaweed with 20 Maine lobsters nestled within it for a big family dinner, but since we had the Relay for Life event, we would have to put that on hold until Sunday, so we took the beer out of the barn fridge and filled it with seaweed and sea “bugs.”While the boys from Maine headed off to buy supplies at Wal-mart, we headed off to Montgomery High School for the Relay for Life event. And what a great, well organized event it was! We showed up and Alan was given a survivor’s medal to wear and a nice gift bag of goodies donated by local businesses. Everyone received a purple “Relay for Life” T-shirt to wear, and we had a nice lasagna dinner while listening to a touching survivor story. We then braved a passing rain shower and went out to the track for the walk. We heard a speech from the mayor, then a very nice motivational speech from a young women, aptly named Hope, who was diagnosed with cancer six years ago while in Montgomery Middle School and is now attending college. Then all the survivors, along with their families and caregivers, made a “survivor’s lap.” It was very emotional, but only a taste of emotions yet to come during this extraordinary weekend.Nancy had her team all setup with a big tent for snoozing between walking shifts and plenty of “fuel” (mostly Twizzlers - as the girls, and Nancy, all have an extreme affinity for them) to get them through the night. After spending some time with friends and neighbors in the festive atmosphere, Ginny, Alan, and I left for home with tears of pride in our eyes leaving Amber with her team to walk through the night to raise money for this important, and now personal, cause.Saturday was the Great Eastern Amateur Cup, the second largest tournament our club runs annually. This is a 90 player, Amateur-only, Professional Disc Golf Association B-Tier event. We were all extra excited about this year’s event as Alan was going to play, and hopefully finish all 36 holes. Saturday dawned bright and early with beautiful weather as I drove Alan out of the sack so we could stop in and check on Amber at the track before driving to the park. Nancy and the girls were tired but happy and still moving - way to go Team! As of this writing I have not heard any final numbers on how far the team walked, but I know Amber raised over $200 and the team raised over $2000. More emotion and tears from a proud Dad at Amber’s accomplishment as he drove off with Alan towards Tyler State Park in Newtown PA.Saturday was a beautiful day for a disc golf tournament. Our dear friend Bob Graham, a professional disc golfer and the NJ State PDGA Representative, acted as Alan’s caddy and guide. Bob helped Alan navigate the course, set him up at the tees, described the obstacles in his flight path, and waved a white towel so he could tell where the baskets were when putting out. Alan shot a 98 the first round and an 87 the second round. Alan’s last hole of the day was the dreaded hole 27, arguably the toughest hole in the layout as players had been taking 8s, 9s, and 10s on it all day, and even some 14s and 15s were recorded. With 75+ disc golfers and fans cheering him into the finish, Alan sank an awesome 20 foot putt to score a six! I was crying like a baby and I wasn’t the only one, as the spectators cheered for Alan and his accomplishment. Thanks to BCDGA treasurer Marc Brooks, you can see Alan playing the last hole. Go to our club website at www.bcdga.com and click on the videos link. Videos 17, 19, 20, 23, and 26 show Alan’s first 5 shots on hole 27 and video #29 shows him making the putt. It is very interesting to watch how Bob Graham was able to use a walking stick and visual queues that Alan could make out to help Alan to understand the types of throws he needed to make. The producer of disc golf monthly, Kevin McGorry, who had just finished his own round in the tourney, can be seen in Marc’s clips also filming Bob and Alan and we look forward to seeing that video as well.In the top division, Advanced Amateur, Josh Connell shot the hot score of 57 in the first round along with another of Alan’s good friends, BCDGA club member Erick Simonds and also two others. Josh also had the hot score in the second round with a 54 to win by strokes over Erick who shot a very nice 56 to take second place. After accepting his trophy and prizes, Josh stated that he had met his goal for the day which was to win in honor of Alan and then presented his trophy to Alan. Tournament Director John Birkrem also gave a very emotional speech as he presented Alan with a special “Role Model” trophy. The applause was tremendous as emotions ran high and lots more tears flowed. What an amazing day! John had run a great tournament, and after the players left and the faithful packed all the gear away, we sat under the pavilion and talked - no one wanted to leave the day behind.The next day we needed to worry about taking care of the 20 bugs in the barn fridge. As founder of the feast, Bob invited John Birkrem, John McGinley and family, and Bob Graham and Kit Basset to join the family clan for dinner. Earlier in the afternoon, Alan, Amber, Bob, Kyle, Josh, and I went to see the new Star Trek movie. It was fantastic even for a non-trekkie like me. That evening we had surf and turf - Bob’s lobsters, John McGinley’s London Broils, Ginny’s salads, and the Nancy Curtis’ cakes made quite a spread. We all pigged out and then played Dodgebee (a new game from Innova that is played similar to dodge ball, but with a soft cloth/foam flying disc) on the lawn until it was too dark to see. We then retired to the back patio to tell good, and bad, jokes and talk movies well into the night.It was a fantastic weekend of great disc golf, great food, great fun, and great friends, all crowned by the great individual achievements made by Josh, Amber, and Alan during the course of the weekend.At 7 am Monday morning we said goodbye to Bob, Kyle, and Josh as they took off to drive home. It wasn’t as hard as some of our past partings because we knew that only four days later on Friday morning, fourteen BCDGA members would be driving up to Maine to see all our Northern friends again for the Dragan Disc Golf Championship at Dragan Field in Auburn, Maine. I’m sure it will be a second weekend we will all recall with fond memories for years to come.Here’s hoping you all find time this summer to find the same joy in the best of times with the best of family and friends.God Bless,Andrew

Well, today was Cinco de Mayo - the fifth of May.  A day for latin revelry.  And like St. Patty’s day, a day that offers to folks of all ethnic backgrounds a reason to embrace things outside their own ethnicity with a great excuse for a good party.  Hello . . . tacos and cervesa!

Well, this Cinco de Mayo of 2009 brings something else to the Sweeton family.  Today is the first anniversary of that fateful doctor visit and MRI that lead us all down an extraordinary journey with Alan for the past 12 months.

I look back and my first thoughts are anger and sorrow.  I’m angry about all we had to endure the past 12 months - terrifying days; sleepless nights; inconsiderate health”care” professionals; drive here, drive there, drive every-damn-where; and the mind-numbing medical, insurance, and social services bureaucracies.  I’m angry about all that we missed like disc golf tournaments, parties, and  family vacations.  I’m angry that my son can’t see.  I’m angry that there is no guarantee that the cancer won’t come back again.

Past the anger is something much worse - sorrow.  My sorrow is mostly not for this past year, but for the future.  I grieve over things missed and to be missed.  I grieve over experiences for Alan that have lost, or will lose, dimension.  Going to a movie, but not really seeing it.  I selfishly grieve for shared experiences that will now likely never happen.  I grieve for opportunities, both the expected and the unknown, now lost.  I grieve over simple things like Alan not being able to enjoy a game of catch tossing a frisbee back and forth.

But, regardless of the anger and the sorrow I feel, I also feel positive emotions too.  I am thankful and I am joyful.

I’m thankful for our faith.  I don’t know how folks without faith go through something like this without the absolute deepest of despair.  I am joyful knowing that God indeed doesn’t give us more than we can handle when we can lean on him.

I’m thankful for the outpouring of love and support from family, friends, and complete strangers.
I am joyful in my understanding of the goodness in the people around us.

I’m thankful for workplaces, workmates, and bosses who let us do what we had to do to get Alan through this.  I am joyful in the better appreciation I have for those with whom we work not just as fellow travelers in the rat race, but as caring individuals.

I’m thankful for the sense of family and community we felt at every turn.  I am joyful that they stand ready and will be there in the future if needed.

I’m thankful for the healthcare professionals, from the lowest paid orderly to the highest paid doctor, who aren’t just collecting a paycheck, but are lovingly putting the “care” into healthcare.  I am joyful that they outnumbered the ones just collecting a paycheck.

I am thankful that Alan attended the monthly Bucks County Disc Golf Alliance meeting with me tonight and had a good time with great friends.  I am joyful that he will do so again.

I am thankful that as I type this sitting in bed, my son is here a year later, lying in his bed in the next room, enjoying listening to a book on tape.  I am joyful that he will learn more ways for technology to help him live a fuller life.

I am thankful that on the 30th of this month, Alan will play in the Great Eastern Amateur Cup.  I am Joyful that although he will do so with a much higher score than he once would have had, he will enjoy it nevertheless, and many dear friends will be cheering him every stroke along the way.

I am thankful that we will be able to again enjoy our family vacation in Maine this summer after missing it last year.  I am joyful that we won’t take it for granted and will therefore enjoy it all the more.

I am thankful that after a year of medical strife and an unusual amount of business travel for me, our family is stronger than ever.  I am joyful that regardless of the future, I know we will remain that way.

I am thankful that my daughter Amber can still get straight A’s despite all the lack of attention in her direction for the past year.  I am joyful in seeing the fine young woman she is becoming.

I am thankful that my loving wife Ginny leans on me for and giving support, even if I’m crying my own eyes out during a tough spell.  I’m joyful that she still calls me her rock regardless.

And most of all, I am thankful for my Lord and Savior Jesus Christ, who died for my sins so that I may have eternal life.  I am thankful that Ginny, Alan, and Amber know Him as Lord of their lives too.  I am Joyful that one day, regardless of when we each leave this earth, we will all be reunited in Heaven, and in our heavenly perfection Alan will again have sight, and we will again enjoy the simple pleasure of tossing a Frisbee to one another.

Thank you each and every one for your love and support this past year.  I am ever so thankful for you helping me to endure the anger and sorrow with my catharsis in writing to you.  Know that your support has brought us all great joy.

God Bless,

Andrew

Hey, I’m NOT in Frankfurt!

On Monday Alan had an MRI and visit with the oncologist in Philly. The office called late yesterday to tell us that the MRI was clear with no evidence of tumor and a decrease in enhancement so all looks good!!

All the paperwork has finally been received from the doctors and submitted to the NJ State Commission for the Blind and Visually Impaired, so now we wait for the wheels of bureaucracy to turn.

Thanks for your continued prayers and may God bless you and yours and remind you of that which is most important during this holiday week.

Andrew

Hello Dear Friends!

I am once again writing to you from the Frankfurt airport, this time on my way to Nuremberg, as opposed to on the way home.  I have a six-hour wait for my next flight, so it would seem a good time to finally write again.

Alan’s final chemo week was mid-February and it went very well with no nausea.  He is now done!!

Many, many thanks to the good neighbors at Schering-Plough who donated the $100,000+ dollars worth of chemo that Alan was treated with over the past 8 months.  What an absolute blessing!

Last week Alan had a basic checkup and lab work done at his regular family doctor to satisfy paperwork for the NJ Commission for the Blind and Visually Impaired.  Once the lab work comes back and the paperwork is submitted he will be scheduled for a two-week day-program “assessment” at their facilities in New Brunswick.  Luckily this is near Ginny’s work so daily transport won’t be too much of an issue.

We have not yet been fully briefed on what to expect from the assessment, but one potential outcome is a sixteen-week “live-in” program that teaches all aspects of living with his disability.

We are very much looking forward to an assessment of computer hardware and software to allow Alan to once again communicate via email which will be such a blessing for him!

In the meantime, Alan continues to spend much of his time listening to music and audio books.  Many thanks to everyone who has passed along audio books they have read for Alan to enjoy.

Now that the weather is improving temperature-wise, Alan has also “hired” his cousin Kyle from next door to help him spend half an hour each afternoon putting into the disc golf basket out back.  Kyle rattles the chains for Alan to hear where the basket is and then retrieves Alan’s discs for him.

Other News:

I should pass along that Renee is doing very well and looked like a million bucks when we saw her on Sunday.  Stan’s wife Diane is also doing well, although frustrated by the doctor’s less than comprehensive information concerning her mini-stroke.  Ol’Sam reports that his sister was having a very rough time with her heavy-duty chemo treatments but a special vitamin regimen she found from Canada has made all the difference in the world for her.  Thank you all for your continued prayers for these folks and we praise God for His continued blessings on them.

We also ask for your prayers for those that grieve the passing of a loved one.  The King family said goodbye to Josh and Caleb’s grandfather (Mary Louise’s father) on 29 January.  Joe Venanzi (my wonderful assistant) lost his mother on 11 March, and my Great-Aunt Dot Stanton passed on 14 March.  Please keep the King, Venanzi, and Stanton/Sweeton families in your prayers as they grieve the loss of their loved ones.

And as always, we thank you for your continued support and prayers for Alan.

God Bless,

Andrew

Hello dear friends,

My apologies once again for the long wait on information on Alan. I hope everyone had a great holiday season.

I am writing to you once again from the Frankfurt airport on my way home from Nuremberg, where I was very pleased to see a workmate, Helmrich, who has been fighting cancer himself with some very rough chemotherapy treatments, looking well. Please keep Helmrich in your prayers along with Alan and Renee, who is also doing well after her surgery and has happily found she will not need to do chemo treatments.

During the week of 15 December, Alan had his fourth of six chemo regimens and was once again sick during the weekend after the chemo.

During the past week, starting 12 January, Alan had his fifth set of chemo and an increased dosage of the anti-nausea drug which seemed to prevent him from throwing up all weekend, but he still didn’t feel so good on Sunday.

We went to Philly on 29 December and had an MRI and the report on it is positive with no evidence of new or leftover tumor. On the Monday morning prior to each chemo set, Alan has had bloodwork at the oncologist in Philly and on each occasion it has come back “perfect.”

His appetite remains stable and he is maintaining weight at a trimmer 275 pounds from his original 305 when this all started.

Over the new year Alan reported a notable change in his sight where although still not much detail, he does see silhouettes at a further distance than before. We thank God for the improvement and pray that it continues.

Alan had a very good Christmas and New Year’s break as many old friends from High School, College, and Youth Group were able to stop by for visits.

9 February will be the start of Alan’s final set of chemo.

Once again, thanks for your continued prayers, and we are wishing everyone a happy, healthy, and prosperous new year.

God Bless,

Andrew

Greetings dear friends,

I have been remiss in updating you however life has been very full. I am once again at Frankfurt airport with a longish layover so I am taking this opportunity to write. I have had some trouble with my Blackberry since yesterday but hopefully it will limp along enough to get this written. Snow and Ice delays with de-icing procedures have cost about an hour and half of time this morning in Nuremberg and many people on my flight have missed their connecting flights but luckily my flight will not board for another two hours.

Alan’s last set of chemo 3+ weeks ago did not go so well. He has reached the upper limit of 500 mg of the Temodar. On Monday night he was up all night sick. On Tuesday we got a better anti-nausea drug and he was OK Tue - Thur evenings. On Friday night he was sick again and he was sick all weekend as well. It is not clear if the illness was due to the chemo or if he may have had a stomach bug.

This coming Monday is the next set of chemo, again at 500 mg, so we shall see how it goes.

Back on November 18th we saw the eye doctors again in Newark. Alan’s sight has shown some slight improvement again, and although it is too slight to make much difference in what he can do, it is a continued improvement and we continue to hope and pray for some meaningful restoration of his sight.

We have heard from the NJ Commission for the Blind and once Alan’s chemo is concluded in February he will be eligible to enter into an occupational program where they will assess his abilities and work with him on computer programs to work around his blindness.

In the meantime Alan is filling his time with Books on tape and an occasional mobility training session using his cane.

Unfortunately my business trip cut short a planned weekend with our friends the Enmans in Maine, but we did get to spend last Saturday there with them and Alan and I played a round of doubles on the beautiful Pleasant Hill course in Scarborough. There was no snow this year so it was an easy round for Alan to get around and he really enjoyed the round and although he could not see much, we used his throws quite a number of times and on one hole his drive off the tee was so awesome the disc golfers on adjoining holes cheered and applauded. Although a short weekend with only one day in Maine with a day of driving on either side, it was a wonderful time regardless.

We look forward to the Ice Bowl Tournament on January 3, when hopefully our friends will be able to come down and spend time with us in NJ and Pennsylvania.

All our best to you all and God Bless,

Andrew

Dear friends,

Greetings from Frankfurt, Germany! It is about 10 AM here and I have flown in from Nuremberg and am awaiting my flight home to Philadelphia. I have unexpectedly received a Happy Birthday present and been upgraded to First Class! This will make the 9+ hours of flight more enjoyable, but will undoubtedly spoil me for future trips.

I am very happy to report that Renee’s operation on Thursday has gone well. Please continue to keep her, Ritchie, Andrew, and Roy in your prayers.

Just a quick note about the Alan’s Army updates and a new feature on the alansarmy.org website.

Alan’s Army Email Updates:

Did you receive this update directly via email from me? If so, great! If not, would you like to? If this reached you through a prayer chain or someone forwarding it, would you like to get your own copy sent directly to you? If so, please drop me a note in reply and we will add you to the direct email. If you’d like to send me a note about who you are, where you are from, your congregation name, how you get the updates, etc. that would be interesting to and I’ll happily read that info to Alan.

New feature on alansarmy.org website:

For several months now an idea has been brewing in the back of my mind. As you know, on occasion I receive a prayer request and have included it within the updates to Alan’s Army. This is good because I know that the updates are reaching many prayerful people. I’ve had people tell me that the updates are going to church congregations and prayer chains not only locally, but across the US and in Europe, South America, and Africa. Since I believe in the power of prayer, I got to thinking about all those prayer warriors out there, the power of their numbers, and how we could use that power to help others besides Alan. I’m sure that many people who read the updates about Alan have prayer concerns of their own. I also recognize that there are many folks on the Alan’s Army list who wouldn’t want to receive lots of updates concerning prayer requests for people all over the world. Some folks simply want to know how Alan is doing and would consider a flood of prayer emails to be spam. So I thought, why not use the website? We could have a separate page on Alan’s Army just for prayer requests. By its nature it is an opt-in, if people don’t want to read that page, they don’t have to. The broadcasted email Alan’s Army updates would continue to be about Alan.

So I spoke with my wonderful wife Ginny about it (Happy 27th Anniversary dear!) and also with our wonderful Alan’s Army Webmaster Larry Squitieri. Ginny would love to moderate a page for prayer requests and Larry now has the website set up so you can click on a “Prayer Request” link and type in your info. Ginny will then check the requests and add them to the prayer page.

Its a work in progress, so we shall see how it goes.

Please go to www.alansarmy.org and check-out the prayer page and link. Please also get this info out to anyone you think would be interested in either adding a prayer request or being a prayer warrior in Alan’s Army.As always, thank you for your time, your love, and your prayers for Alan.

Hi all!

Last week Alan had his blood pressure checked sans-Hydrochlorothiazide. It was “perfect” so he now has one less daily pill to take.

Today we saw the neurosurgeon in Philly, who removed the tumor and installed the shunt way back when, for a check-up. All is well, he wants another MRI at the end of November, and then we can go to a 3 month schedule. We can also start weaning Alan off the Cymbalta and if he feels OK we can drop it entirely which would be a second daily pill to get rid of.

Alan also asked the doctor about alcohol consumption as he’s been wanting the occasional Guiness. The doctor said that in moderation it was fine and probably actually good for him and a beer a day would probably make him feel just as good as the Cymbalta.

Tonight there is a disc golf club meeting that I will miss (I’ll be at Philly airport waiting to fly to Germany) and I suspect there will be lots of friends vying to buy Alan his first Black and Tan in 8 plus months. (Remember folks, just one.)

That’s the news; and as always thanks for your prayers and support!

Andrew

All - a prayer concern:

Our dear friend from down south, Stan McDaniel, reports that his wife Diane had a stroke last Monday. The stroke was relatively minor and she should have a full recovery but the doctors are concerned about a possible underlying condition that caused it. Diane will be undergoing testing to look for this possible underlying condition and is actually having a spinal tap as I write this.

Please keep Diane, her doctors, and the entire McDaniel family in your prayers.

Many thanks,

Andrew