Tuesday, October 29, 2013

Mayo visit

We are on our way home after meeting with the oncologist and surgeon here.  The main new symptom I have been having is weakness in the right side of my face affecting my vision.  Things are blurry, particularly later in the day.  From the scans, they can see tumor along the nerve were it goes through a small hole at the skull base.  This area is not a candidate for surgery as the nerves are small and fragile.  The best hope is that the chemo works to stop the tumor from growing and the nerve could regenerate somewhat or entirely on its own.  There is an area of tumor around the brainstem but the surgeon said even that is risky and there appears to be no symptoms from that.

I've also started on a steroid late last week.  The headaches and pain are gone now so I'm thankful for that.  The steroid will reduce any swelling from the tumors.

My voice has been weak and sounds hoarse lately.  I had a sore throat last week but the surgeon thinks its more a function of tumor growth.

Next MRI will be early December.  We should know then if the pazoponib is working or not.  I've been on that about three weeks now.

It's been harder lately to keep my attitude as good.  I've been more discouraged as I feel my body decline.  Being harder to talk, I'm more likely to be quiet which isn't me so much.  The last couple days my sight is probably weighing me down too.  I don't want to discourage you, just be as open as I can so people know what to pray for.  Just pray my sight gets better and I can keep a good attitude.

Derek & Leann

Thursday, October 17, 2013

Received Powerchair

Today, our family was excited to see Derek fitted into his new powerchair.  This chair is quite the amazing chair!  Some features include tilt, elevate, seat cushion adjustment, and tight turns.  We are very pleased with the service of National Seating and Mobility in Bartonville, IL, as well as our therapist Joann from Hopedale Medical Complex, and our insurance company Blue Cross Blue Shield of Alabama.

On the downside, Derek's facial nerve is being affected by the cancer now, and visually I can tell his right side of the face does not repond like the left.  He has also noticed some difficulty again in swallowing and talking.

We appreciate your continued prayers for us.


Friday, October 11, 2013

Started Votrient

On Wednesday we got word that based on my blood work, I would not qualify for the Phase II trail at the NIH in Maryland.  We were placing hope in that treatment, since it is new and if I could get in, quite a bit earlier than we will see it publicly.  The trial was based on the body's immune system attacking the tumors and involved a couple hospitalizations.  So that was quite a letdown to not have that option.  I think we just have to view it as God knowing it wouldn't work and sparing us the travel or for some reason he didn't want it.  Otherwise it's too hard to figure it all out.

I started then on Votrient, which is oral every day, 4 little pills.  I've taken it two days now and i'm thankful I can swallow them.  Crushing results in different and higher absorption, which can be done but they prefer not.  It's easier to swallow them than mix suspensions all the time.

As far as how I am doing, I still have headaches and neck/shoulder pain and stiffness.  Pain killers are usually controlling it.  There have been a few times where Leann has to help me get dressed because I cant bend over enough but that is rare.  I've been going to work still and Tues night was able to ride in the combine with the kids for an hour or two.  I'm still eating some, not always, and for sure not a lot.  But enough that it cures my desire for good tasting food.

Thanks for your prayers.  Please pray that I can endure whatever pain I have, and that God would take away whatever pain and headaches I do have.

Derek & Leann

Monday, October 7, 2013

Increased pain

Hello to all,

As always, we sure do appreciate your prayers!

Derek has had increased pain in the last couple of weeks.  He is on a tylenol / ibuprofen regimen with maybe one daily dose of a narcotic.  Of course, this has to be timed so that he doesn't drive 6 hours after taking it.  The pain is generally in his head and shoulder area, but many times is taken away by the medicine.  I'm so thankful for pain meds!  His legs have become weaker, causing him to move a lot slower.  This, however, does not slow down his desire for fellowship including us visiting others and others visiting us.  We are so encouraged by being with others.

We've received the Votrient (the next chemo drug prescribed) in the mail, and it is covered by insurance (big plus).  He has not started taking this drug, because in the mean time we heard of a clinical trial he may qualify for in Maryland.  This is run by the National Cancer Institute and is trial #08C0121.  It is specific to cancers which have spread beyond their original site and are not responding to treatment.  The first steps here are to see if Derek is positive for the HLA blood test marker A0201.  If he is, we can proceed to see if his tumor presents with the NY-ESO-1 protein.  If it does, then we can proceed to a 2 week initial screening visit to Bethesda, MD.  We are awaiting these first steps.  In order for him to be entered into the clinical trial, he has to be OFF of chemo drugs for 1 month prior to starting the study.  This is why he has not taken Votrient yet. The clinical study is ran by Dr. Rosenberg.  Here is a link detailing the study:  http://bethesdatrials.cancer.gov/clinical-research/cts.aspx?ProtocolID=NCI-08-C-0121

Also, part of my time has been devoted to obtaining a van (equipping it with a lift), powerchair, and discussing ramp options for our house.  My goal is to keep Derek as independent as possible.  He still loves his job, and is able to work at least half days.  He claims he can't remember as well and processes things slower, but in reality he still does just fine.  He keeps me in line!

We've enjoyed a couple weekend trips, church, finishing up the gardens, watching the pipeline come through the fields to the north of us, wiener roasts, and teaching our kids.  Lexi is still loving to read.  She's really improved on piano this year, and makes a few dollars "babysitting" Lainey while I get other things done.  She and Wesley have joined a choir this year, and I love hearing them practice singing in the van.  Wesley is using his slingshot to hunt, playing more baseball for fun, and he turned 8 last week!  Whitley is in preschool, and she can't get enough letters and numbers right now.  Lainey isn't quite walking yet, but she makes her requests known.  Her newest thing is climbing up on tables.  I'm thankful we are all sleeping quite well.

My Jesus I Love Thee, I know Thou Art Mine.  I'm so thankful for His shed blood that by believing we have eternal life.