Alan’s Army

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