Alan’s Army

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
 

OK, sorry for the wait folks but I have been very busy with work (9 hour budget meeting yesterday for example.)

We could use prayers for Alan’s eyesight right now.  I called the neuro-opthamologist on Monday because I was concerned Alan’s eyesight wasn’t approving.  He set up a visual field test for Alan at JFK in Edison on Tuesday afternoon.  Last night he called and said that the results, for the lack of a better medical term, “sucked.”  He asked us to come in to see him today at 1pm.  He did a bunch of diagnostic stuff, left an “Emergency” message for the neuro-surgeon in Philly to call him back, arranged for another CT scan, and now we sit and wait.

<Sigh>
Other Quick Highlights to catch everyone up.

- The recommended Medical Oncologist in Princeton is not “in-network” so we will stick with Dr. Stadden in Philly.  It means a longer drive once a month for a check-up and bloodwork, but we liked him a lot so it is worth it.  It also keeps us closer to the “brilliant” behind-the-scenes Oncologist with the possible protocol for Alan after radiation.
 
- We saw the Radiation Oncologist at Princeton on Tuesday morning.  He recognized our name as he mentioned he lives in Montgomery and a Gerry Sweeton, who was able to fix things that others said were unfixable, used to work for him.  (Its kinda weirdly odd that we should run across my Dad’s name in the context of Radiation Oncology twelve years after his death caused by cancer.)

- Alan will start radiation and chemo on July 1st.

- He will have a total of 33 radiation treatments 5 days a  week across 6-7 weeks.

- During the course of radiation he will have two chemo pills each day, 7 days a week.

- Schering-Plough has accepted Alan into their “Assistance Program.” We don’t yet know exactly what this means as to how much of the cost they will cover, but after the latest discussion with the Medical Oncologist I calculated that the out-of-pocket for the chemo pills alone could be as much as $100K (yeah, that’s a hundred thousand dollars) over the next 14 months so we will thankfully take anything and everything they can offer him.

So our two weeks of bliss in Maine are down the tubes, but thankfully Ginny’s family will utilize the cabins at Camp so we don’t lose our weeks for next year.  Who knows, maybe we can go for a shorter visit in the fall.

Since we can’t head North, our friends Bob and Kyle Enman are planning to drive down from Maine this weekend to visit and Alan can’t wait to see them.

So, overall Alan is feeling great, the problem is his eyesight.

Thanks all for your continued support and prayers.

God Bless,

Andrew

Yes!  Praise God!

The secondary pathology study of the tumor  shows that both chromosomes are missing!

This mean’s that Alan should better respond to the overall radiation/chemo treatments.

Thanks for your continued support!

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 bigs@bcdga.com 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.

Writing on Saturday about the crazy day that was Friday:

The day started with an email to the neuro-surgeon’s office in Philly telling them about the bizarre events with the doctor in Edison looking for a reason to keep Alan.  10 minutes after my email Ben called to discuss.  He said that they could think of no reason whatsoever why Alan would need a nuclear series done.  He also said that the adjustment to the shunt was a five minute procedure that could easily be done at the office and they were planning to do so on Tuesday.  He agreed that Alan should go home and get acclimated over the weekend rather than lay in the hospital accomplishing nothing for two days.  Ben said he would call the JFK doctor.

So, when we arrived at JFK, they were actually gearing up for him to leave.  A wheelchair, walker, and shower chair were delivered to his room and about 20 minutes after the guy left, Alan’s physical therapist came in and said “that’s not what I ordered - the wheelchair and tub seat are both wrong.” Long story short - it all came home with us and they will swap it on Saturday.

[Station Break - it’s 6:15, the coffee has finished brewing, its already 67 degrees out and the weather people say it will be over 90 degrees today so I’m going to move some mulch while it’s still cooler and everyone else is asleep.]

[1:30pm - OK about 4 of the 5 yards of much are moved, and its now 91 degrees in the shade and humid as all get out.  Time to eat something and sit in the AC for a while.]

So where were we?  Oh yeah, so Alan is all packed and we are ready to go and just waiting on paperwork from the nurses, and the Neuro-opthamologist shows up.  After a lot of hemming and hawing about uncertainties etc. he tells us that he is very concerned about the pressure on Alan’s optics.  He hopes that relieved pressure will help Alan’s sight, but is worried that continued or further pressure will cause permanent loss of sight.  He said he would prefer that Alan’s shunt be adjusted right away and not wait until Tuesday. 

[3:05pm - 93.9 degrees in the shade.  Rest of the mulch is moved.  Another 5 yards is ordered and on its way - oh joy!]

So we told him that the rehab doctor said they couldn’t do a shunt adjustment without a nuclear study and they couldn’t do that until Monday.  He rolled his eyes at that and said “well, OK, could your people in Philly do it?”  So we said “Let’s call them”  So I got Ben on the phone and the Neuro-Opthamologist explained his concern and before you could say “Alan, we are leaving but you can’t go home quite yet” we were on our way to Philly.

We got to Philly at about 2:50 and by 3:10 we were in with Ben who did a simple external,  purely mechanical, procedure with a magnetic disc to increase the flow on Alan’s shunt.  It took about 3 minutes and was so simple that I could easily duplicate it now days later - so why couldn’t JFK do this simple outpatient procedure without keeping him for three days and conducting a nuclear study?

In$urance money, pure and $imple.

So, after thanking Ben for taking care of Alan we took off for home and the pharmacy wars started.  JFK had given us a 3 sheet long med list with 19 items on it to pick up. 
Seven of them turned out to be prescriptions and twelve were hospital code for over the counter items.  I mean really, if you want us to pickup vitamins B-2 and B-6, simply say so.  I spent 1/2 an hour scouring the shelves for Riboflavin and Pyridoxine Hcl.  So, an hour later we finally left with the twelve items plus a blood pressure cuff, and due to their blatant racist favoritism at the pharmacy counter I had to go back at 9:30pm to get the seven prescriptions.  Thankfully I had the foresight to have them just fill for 10 days in case Philly decides to change any meds.  Without a prescription plan the current set of prescriptions are almost $23 a day.  We will type a list and take it to other pharmacies for comparative pricing after Tuesday.

So by about 7pm Friday night Alan was finally home and loving it.  As did we, the dog, cats, aunts, uncles, and cousins.  A pepperoni calzone and his own bed with Angel made Alan happy.

Saturday:

Well, it hit 95 degrees in the shade today.  Its bad enough that we “lost” the month of May somewhere, but now its suddenly August.  Alan reported sleeping much better in his own bed.  He walked next door to Aunt Nancy’s at 10am and she made him waffles and Bacon.  Apparently he also polished off their entire supply of milk.  After ravaging the Curtis village, Godzilla then walked over to his grandparent’s house and visited for a while on the porch.

Neighbor Jack Hunt stopped in with ideas on building the tub support and said hi to Alan.

Andy Beth came by and spent the afternoon visiting with Alan while Ginny cleaned the house that had been ignored for a month.  I shlepped 5 yards of mulch, and Amber did homework.  1/4 inch slabs of Pork Roll (thanks John!) off the grill covered with cheese on fresh hard rolls with ice cold slaw on the side made a yummy dinner.  We watched Jurassic Park as Alan figured the dinosaurs would be big enough on the screen to see. (Only so-so success.)

I came home at twilight after making a run to a different pharmacy for a pill sorter.  Alan gets Meds every 4 hours from 8am to Midnight so a weekly pre-sort seemed the way to go.

Alan had some tylenol today for a slight headache.  His BP was good so he didn’t need the second BP med.  He did a bunch of walking around the house with mostly verbal visual queues only and spent a lot of time outside on the patio.

Everyone went to bed exhausted.  Sorry I never finished the update.

Sunday:

5:50 AM - its already 73 out - 5 degrees hotter than this time yesterday.  Humidity is around 90 percent.  Time to start wheel barrowing mulch again.
8 AM - Woke up Alan and gave him his meds.  He said he slept well.

76.7 degrees already.  Need to do more mulch than start building a tub support with a step and 2×4 upright between the floor and ceiling.

Unless something profound occurs I will likely wait until after the Tuesday visits to the neuro-surgeon, oncologist, and radiation oncologist for the next update.

Thank you all for your continued prayers and support!

Love,

Big Dog