Alan’s Army

Sorry for the very late update.  This morning was spent on the phone with Alan (we are not allowed into JFK until 4pm), on the phone with various medical personnel, on conference calls for work, and planning things for the house like a hand-rail for the stairs and handholds for the tub, etc.  Early afternoon was a Walmart trip enroute to Edison for gym shorts, underwear, ginger ale, etc. for Alan.  Paramount for Alan was a little clip-on fan for his bed rail as his JFK room is a very hot 70 plus degrees where the NICU in Philly for the last week and a half was about 58 degrees - even I was wearing a fleece in there most days.

Unfortunately today was a bad day for Alan.

He started off with a headache and throwing up.  The pain, the sudden throwing up without feeling nauseas, and the lack of appetite were frighteningly like his condition prior to the operation.  Our immediate concern was that the shunt was not doing it’s job and the pressure was building up.  After a couple of discussions with Alan on the phone during the morning where he didn’t seem to be getting better, I got a hold of the nurse at JFK to ask if the doctor was planning something.  She said he had just written the order for a CT scan.  I then called our PA in Philly to let him know what was going on and he said he would call the Dr at JFK.  At about 3pm they did the CT and at about 5:pm? we saw the Dr. at JFK.  He said the CT didn’t show any unusual swelling, but there might have been some “shifting” of the brain that caused the  symptoms.  He said they didn’t have a previous CT to compare with to be sure, so Ginny handed him copies of the CTs from Philly that we had the foresight to bring with us.  He should have more news for us tomorrow.

So they are treating the symptoms with pain killers and anti-nausea drugs.  Alan felt a little better around 6:30 and finally drank some liquids and ate a little bit and kept it down.  His head still hurt and he felt best laying down.  A couple friends called his cell but he felt so bad he didn’t want to talk, so I just relayed their messages to him.

We also talked to the Dr. about Alan’s vision issues and he said they would have the neuro opthomologist group check him out.  We then asked about Angel visiting him and he said that he felt Alan could probably be allowed to go outside in a wheelchair this weekend so we will drive Angel up to see him.  They both will be thrilled.  Amber should also be over her cold so it will be a great day for Alan as he has missed his sister.  “She’d better be better soon and come visit - I kinda love that kid” are Alan’s words.  The “kid” will probably want to exercise her driver’s permit on the way to Edison as she hasn’t had a driving opportunity for two weeks now.

Well, I’m off to bed dear friends.  Exhaustion is clouding the brain and I’m looking at the blackberry cross-eyed.  No school tomorrow so I don’t need to be up mega early to see Amber off, but I do need to go into the office for most of the day before heading off to see Alan.  Hopefully he will have a better day tomorrow than today.

As always, thanks for caring, thanks for praying, and may God Bless you and yours as He has blessed us through you.

Andrew

Well, it has been a real roller coaster ride of emotions since the last update.

Yesterday the doctors mentioned that the abilities Alan has on his left side are only what they would have expected to see after 4 to 6 weeks post-op and in-patient physical therapy, not just a week laying around the hospital.  So they thought they would send him to a regular room and then discharge him on Wed. (today) to home.

Then late yesterday we saw the chief resident who worked on Alan’s operations with his neurosurgeon. Alan’s tumor pathology came back and it’s unfortunately not benign.  It has a ridiculous name:  Oligodendroglioma. The doctor stressed that we should be very careful about searching the internet as there is a lot of bad information out there.  He said the UPenn or Mayo Clinic sites were the best.

Although it is too early for specifics on the treatment, Alan will need radiation and chemo.

The good news of the bad is that this kind of tumor is treatable (unlike what Senator Kennedy has.)  The pathology is also not yet complete.  This type of tumor can be missing one or two chromosomes.  If it is missing one good; if missing two, even better.   Apparently if missing these chromosomes,  it is more responsive to a certain drug in pill form that Alan can simply take at home.  It will take 2 weeks to get back this pathology report.

Regardless of the treatment the neurosurgeons, radiologists, and oncologists agree on, it will be several weeks before it starts.  They want him to get home and fully heal from the operations before he does anything else.

Alan is now in a regular room - 727B - STOP - STOP - this WAS as of about 4:30pm yesterday - SURPRISE!  he’s actually now in Edison NJ.

We went to Philly today with the expectation that we were bringing Alan home and as of 11:30am we were set to get him out at about 1:30pm.  After a talk with the PT folks and a description of our little old farm house, the stairs, bathroom, etc. they decided it would be best for Alan to spend a week in a rehab facility where he could get some intensive therapy with strengthening, stairs climbing, etc.  He was very, very disappointed as he said he envisioned himself within a few hours sitting on his tailgate with a cigar and his dog.

So, at about 2:15 they took him off in an ambulance and drove him up here to Edison.

If anyone would like to visit Alan he is in Room 3537 on floor 3 - East Wing.  The address is:

JfK Johnson Rehabilitation Hospital
65 James Street
Edison, NJ

I think Lot B is Rehab parking and thankfully is free.  (The $15 every day in Philly for parking was starting to really add up on top of the gas cost back and forth each day.)

Visiting hours are:

Mon - Fri - 4 pm-8:30 pm
Sat - Sun - 1 pm - 8:30 pm

Thanks everyone for their continued support and prayers for Alan.

God Bless,

Andrew

PS -  I will try to get an email out with some photos tomorrow.

Its pouring rain in Philly yet again, but Alan looks much better today!

The wounds on his head and belly from the shunt operation hurt a little bit but no big deal.  He’s been downgraded to plain old regular Tylenol -  “No more good stuff” says Alan.   :^(

They did a series of X-rays this morning to check out the shunt in his belly - no word yet on those but Alan doesn’t have a headache so it must be working!

At about 9:30 the Physical Therapists took him for a walk down the hallway and were thrilled with how far his left side has come.

The Speech Therapist was in and with a little coaching, and deliberate thought, Alan was able to add some inflection to his speech (note: she’s also way cute.)  She was pleased and said she thought he could have a script for outpatient speech therapy.  She is also going to have an opthamologist see Alan to take a look at his sight issues which haven’t improved.

At 1:30 they unplugged him from everything, and removed all his sensors - he’s a free man!  They expect to move him to a regular room later today.

We saw the PA who is going to check again on the tumor and brain fluid pathology results.  She also said that the PT folks were so pleased with his progress this morning that they are going to skip the in-patient rehab and send him home instead!

We will now have to check out where he can get good out-patient therapy.  Who knows - maybe he can end up getting matching appointments and ride along with his grandfather when he does his knee replacement therapy!

So in all, #16 is a very good update.  Please keep the prayers coming on the tumor pathology, that’s the next huge obstacle.

I had a nice chat on the phone today with a dear disc golf friend - Sam Covington of Innova in Rock Hill, SC.   He asked if Alan and I would be down for the United States Disc Golf Championships again in October and I told him absolutely!  Besides praying for Alan he sends his kind regards to BOB and Kit and reminds them that they still need to “do lunch.”  We certainly will all do that in October Sam!  Our best to Zeb and all the Innova staff who have been keeping Alan in prayer!

I will send another update later with room info and driving directions so those who are close enough can visit.

Thanks all and God Bless,

Big Dog

6:45 - Alan is finally back in his room.  He has his big football helmet back on.  His head hurts a little bit and he’s throwing up a bit from the anesthia.  He’s really thirsty but they’ll only let him have a few ice chips for now.  We are hoping to hear some more details from a doctor at some point.

Alan just moved his blood-oxygen level monitor from a finger on his right-hand to a finger on his left and when Ginny asked “Are you allowed to do that?”  He said “I’m allowed. to do whatever I want - I just had brain surgery”

9:30pm - no Dr yet, so we are heading out for the drive back home to have some dinner and hit the sack.  Alan is happily sipping some ginger ale.

Thank you all for your continued support!

Andrew

The Dr called us in the waiting room at 6pm.

The shunt operation was a success and Alan will have another CT scan before he is returned to his room (good old NCIU #16.) They also took samples of the Cranial Spinal Fluid for testing of Proteins, Tumor cells, and Bacteria.  Those results will take a few days.

Many thanks for all of your prayers.

Andrew

1:35pm EST - They just took Alan off for the shunt operation - thanks for your prayers!

Sorry this will be short, very tired, need bed.

Alan had some pain today with
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That’s as far as I got last night, I’m very sorry about that.  I’ve never been so exhausted.  So yesterday was Sunday in a hospital.  Very slow.  Alan had some bleeding from the spot where the tube goes in the back of his head.  Intellectually I know it was just superficial from the wound, but as a Dad  it was blood on my baby boy’s pillow nevertheless.

Alan had some head pain when they shut the valve for him to sit in the chair and eat dinner, so he ended up back in bed on his back and I fed him dinner a bite at a time.  He ate every last bit of it including the piece of cheesecake I got for him in the cafeteria downstairs.

Some disc golf friends came by today and Alan was very happy to see them.  Erick Simonds, Joe Mela, Rex Hay, and Eric Robins all stopped in and spent some time with Alan.  While Erick was there, Aunt Dari came by as well.  Alan told me this morning on the phone that Tim and Marie Fry also came by later after we had left.

Alan was very happy that Amber was there again yesterday and asked to sit next to him and hold his hand for a while.  Unfortunately Amber is coming down with a wicked cold so she may not be able to visit for a bit.  Due to a weird biology testing schedule, Amber had a delayed opening today, with 15 minute periods all day so Ginny had the bright idea to have her stay in bed to hasten when she can see Alan again.

I spoke to Alan this morning a bit after 7;30 and they were about to take him for a CT in prep for the shunt operation.  The best info available now is that the operation is likely to be at noon or 1 pm today.  The doctors told Alan it would be a 45 to 75 minute operation.

Again, many thanks for everyone’s thoughts and prayers for Alan.  It is such a blessing to him and us to know there is a whole army of folks supporting him.

I will send a quick operation prayer alert to “Alan’s Army” as soon as we know specifics.

Thank you all and God bless,
Andrew

Hi all,

OK, so the protein level in the brain fluid is good at 117 which is well below the 200 mark they wanted to see it under.  Unfortunately they clamped the drain again early this morning and the pressure built up and Alan’s head started to hurt.  So it looks like he will have another operation on Monday to put the internal shunt in.  Apparently this isn’t real uncommon.

Those squeamish folks should skip this paragraph –  The shunt is a drain that runs from the brain ventricle down into the flesh around the belly where the excess fluid is absorbed and gotten rid of.

OK, safe reading again - Alan’s response to all this was “I don’t recall signing up to go under again in a week.”

After all the forward progress this week, Ginny and I are less than thrilled that he is being operated on again.  I can’t help but wonder what this entire experience would be like without our faith - I can’t imagine how much more difficult it would be.

Amber is here today and Alan is very happy to see her.  I still have not figured a way to smuggle Angel in for a visit.  Uncle Dan and I saw two therapy dogs in the hallway here the other day and I tried to talk him into petting one and swiping it’s ID badge, but he wouldn’t go for it.  Angel isn’t exactly a fat labrador who moves at half a mile an hour, so he probably wouldn’t have pulled off the impostor bit anyway.

Ginny made some comment today about her hairdresser and Alan ran his hand over his head and said “I’m REALLY going to have to have a talk with MY hairdresser.”

The emails, letters, cards, and packages with peoples heartfelt writings, diaries, stories of their own and friends tribulations, positive energy, prayers, and outpouring of love for Alan continues to be a tremendous blessing to us all.  Each day after settling into his room, we first fill out his menu for the next day - who knew he loved soup so much - and then I read him everything that has come in on both his and my blackberry and Ginny reads the cards that have arrived at home.  Its always the highlight of his day.  So even if its just a quick hello, please keep them coming.

Thanks and God Bless,

Andrew

Today a nurse came in and asked Alan how he was doing. He replied “Well, I’m in this room, they won’t let me out and I’m wearing hospital gowns and would kill for some underwear!”

Anyway, some photos.