Alan’s Army

OK, Alan has gone in for the surgery.

Thanks for your prayers.

We’ve been in the pre-op waiting room since 6pm.  A trauma case came in and took the OR  so we are waiting til it frees up.  But at least we actually saw the neuro-surgeon.  He wants to do the “Optic Nerve Fenestration” to both sides as he says it can’t hurt the left eye and could possibly help.  The downside is that the procedure could take away what little sight he has in the right eye, but their feeling is that he will likely lose that anyway, so its worth the risk.  He also wants to put Alan on serious intravenous  steroids so he is now talking about keeping him here for three days.

I will update further, thanks!

OK, as Alan just said “Today has gone from bad to SUCKS”

We were told in Philly that this was an outpatient procedure. But they are now admitting Alan to University Hospital and he will be here at least overnight. No word yet on when the surgery will take place.

Updates to follow . . . Same Alan channel, unknown Alan time. (Showing my age - Baby Boomers will recognize the end-of-episode tagline from the TV Batman.)

Thanks for your continued prayers!

Love,

Andrew

Prayers requested.

We are leaving Philly and headed to Newark. The Philly neuro-opthamologist agrees with Dr. Rosenberg at JFK that time is of the essence to improve Alan’s sight. They want Alan to have a surgical procedure that makes slits in the sheath around the optic nerve to relieve the pressure.

The appropriate surgeon is not available at either Penn or JFK until Wednesday, so Dr. Rosenberg has arranged for a surgeon at the University Medical Center in Newark to do the surgery today. They will do the right eye hoping to improve or at least maintain sight as it is. There could be ancillary improvement to the left eye, however, that is a long shot as the doctor has said that nerve has already atrophied.

Disturbingly, he also categorized the planned procedure for the right eye as “heroic efforts”.

Needless to say, we very much appreciate your thoughts and prayers for the doctors and Alan’s eyesight at this time.

Further updates to follow.

Love,

Andrew

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

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

Hi all,

Sorry this didn’t get out sooner but I’ve attached photos from our disc golf outing on Saturday.

So far, no change in Alan’s sight.  The steroids are giving him the hiccups and some unpleasant heartburn though.  The next CT is scheduled for 11:45 Wednesday morning and we will see the neuron-ophthalmologist sometime Thursday.

We had a great weekend with our friends from Maine.  Bob and Kyle arrived Friday night and left this morning.  Many thanks to Mait and Bernice for providing them with beds!

On Saturday we met up with John McGinley and BOB Graham and played Disc Golf at Harry Dunham Park in Liberty Corner, NJ.  We picked Harry Dunham because it is a short course in a very pretty, mostly flat grassy park.  It’s a perfect low-key course for beginners, families, and disc golfers who need help getting around.  We led Alan around, set him up on the tees, described the shots to him, and jingled the chains so he could putt by sound.  He couldn’t see a whole lot, but he had a blast and said it felt wonderful to get out and throw again.  We played best disc triples and Alan’s team used his drive on eight of the eighteen holes!  We played the short tees, had lunch, then went back and played the long tees.  What a great day!  We were all so thrilled to see Alan enjoying himself out on the course!

What a wonderful blessing it was to be out with great friends enjoying disc golf together and together enjoying Alan enjoying disc golf again.  It was truly magical — Bob, Kyle, John, and BOB –- thank you so much for making it happen.

It was quite a lot of activity for Alan, so Sunday was a low-key sit-around-and-talk day.

Thank you all for your continued support.

Love,

Big Dog

Sorry, I fell asleep last night with the Blackberry in hand.

After all kinds of trials and tribulations yesterday Alan was back home around 5pm.

The test yesterday proved that the shunt is indeed working.

So in an effort to improve the sight situation the shunt was dialed down one more setting to (the lowest - most drainage) and they have put Alan back on steroids as well.  They want another CT scan, probably on Wednesday, to see what the ventricles look like.  If things are not improved he would likely go back in to Pennsylvania Hospital, probably on Friday, for another operation to remove the shunt and replace it with another model that can provide greater drainage.  So we wait and see (hopefully!)

A letter arrived from Schering-Plough yesterday that says “Our comprehensive reimbursement search did not uncover any reimbursement options at this time.  However, because of your financial situation, we have approved you to receive this medication free of charge through our program.”

Praise God! And many thanks Schering-Plough!

So the giant black cloud that has been hovering over us about the chemo cost has been removed.  The oncology doctors etc. still are not covered, but we are very relieved and thankful that this huge expense has gone away.

We are very pleased that Alan is not back in the hospital this weekend as our dear friends Bob and Kyle Enman are visiting from Maine.  We wish we had been able to go North for the big tourney or vacation as we miss seeing Nan, Dragan, Josh, Gordy, Victor, Mike, Scott, Dave and all our other “Northern” friends, but we are so delighted to spend some time with Bob and Kyle.  John McGinley is coming over and we are going to meet up with BOB Graham and go play the Liberty Corner course which is a pretty open grassy park type of course that Alan will be able to at least walk around on.

So far this morning Alan hasn’t had any problem with the steroids and nausea so hopefully it will be a nice little walk for him.

Thanks all.  I’ll send the next update if we have a change in Alan’s sight or when we get results of the CT scan on Wednesday.

Thank you all for your prayers!

Love,

Big Dog

OK, so the CT scan shows that Alan’s ventricles (channels in the brain that the cranial spinal fluid (CSF) flows through) are unchanged in size so the “pressure” in his skull is likely the same as it was on 6/5.  This is inconclusive, it might be OK, it might not.

A manual exam looking through his eyes shows the optic nerves are still swollen.  This is not good.

Photos through his eyes show that the nerves and blood vessels are unchanged from the last photos.  the left eye is paler, but that is also “inconclusive.”

Testing shows his ability to see with his right eye to be pretty much unchanged but his left eye has gone from “light sensing only” to totally blind.

Because the ventricle size and optic nerve swelling have not changed, the neuro-opthomologist doesn’t find any of this to be conclusive of anything except the optic nerves are still swollen.  He is however “extremely worried” that things haven’t got better yet and wants proof that the shunt is doing its job properly and is not the cause of the pressure and swelling.

After putting him back in touch with the surgeon’s office the decision is that tomorrow we go back to Philly to HUP for a shunt test.  Something will be injected into the shunt’s reservoir under Alan’s scalp and then it will be “watched” to see if it properly drains through the shunt apparatus into his belly.

We will then go crosstown back to the surgeon’s office.  If the shunt is shown to be working properly they will likely dial it down to increase the drainage.  If the shunt is NOT working properly, Alan will be admitted back into Pennsylvania Hospital and they will operate again to put in a new shunt.  It is unknown at this time what that would do to the radiation and chemo schedule.

The hope and prayers are that eventually the optic nerve swelling will decrease and he will regain some or all of his sight.  The other possibility is that the optic nerves are dying and his vision will stay the same or worsen.

<Heavy, Heavy Sigh>

Ginny says the roller coaster ride is getting to be too much roller and not enough coaster.

Every night I go to bed asking God to take all of this from Alan and to give it to me instead.  Every morning I wake up disappointed that His Will doesn’t match my own.  Nevertheless, I thank Him for the many, many blessings in my life.  I thank Him that Ginny, Alan, and Amber all know Him.  I also thank Him for allowing me to take tremendous comfort in absolutely knowing that 100 years from now, none of these earthly troubles will matter at all — as we will all be in Heaven together, perfect, and in His presence.   I can hardly wait to see the disc golf courses.

Your prayers for Alan are coveted, and I thank you each for being one of my daily blessings,

God Bless,

Andrew