Remission!

Brandy and Elizabeth both got good news today . . . they don’t have to come back to Dr. Schwartzman for any more treatments unless they need to!  They have to come back for a re-check in a year, but basically they are in remission! Hooray!

Yesterday Brandy was very much out of it after her treatment, and Elizabeth was not feeling well at all.  After both took a long nap, we went out to dinner at Chili’s (the closest sit-down restaurant).  Neither ate much; Brandy wasn’t very hungary and Elizabeth still wasn’t feeling well.  This morning, though, both girls were feeling good.

They were feeling even better after getting the good news at the end of their treatment today!  Brandy was a “happy drowsy”, while Elizabeth was all smiles!  We are all pretty excited, and plan to celebrate tonight if both girls still feel good. 

Tomorrow we go to visit my family in Northern Virginia; Elizabeth and Lynn will spend the day with Lynn’s cousin’s family and will head back to Florida on Sunday.

Did I mention HOORAY ?!

Gordy

“Nuthin’ goin’ on”

Brandy said that she doesn’t know why we should update the blog anymore, since there is “nuthin’ goin’ on.”  (A great quote from an English major, huh?)  Still, it does sum things up.  She’s still doing PT 1-2 times a week, she’s still using her forearm crutches, her back still hurts, and she’s still planning on grad school next Fall.

Actually, there is a lot going on.  At PT, Brandy is working on walking with one crutch and regular shoes.  She’s doing great!  She is really making great progress!  The insurance companies may stop approving her PT soon, which would be a shame since she’s made so much progress but still has a long way to go. 

Brandy doesn’t use her wheelchair much outside the house anymore.  She even did a complete trip to Super Wal-Mart with her crutches — that’s quite a feat!  (No pun intended.)  Her back still  hurts off-and-on, but it moves around some and still doesn’t seem like RSD pain.  There are times when it takes her breath away, and other times when it just hurts.  But there are also times when it doesn’t hurt . . .

As I mentioned in the last post, Brandy and Lisa went with me to Salt Lake City a few weeks ago.  She did great getting into and out of the planes both ways, and flew just fine in coach.  It was just over a year ago that she had to fly first class because of the pain she was in!  We all had a good time despite the cold weather.  Lisa did a lot of work on her family history, and Brandy helped her and did some research on my family and our nephew’s family.  One day Brandy wheeled herself uphill 2 city blocks from the hotel to the trolley, then took the trolley downtown (2 stops), got off and went another block to meet Lisa at the geneology library!  She certainly does well in the city!  We came back on October 31 and had fun with the baby on her first Halloween (see the photo below).

Brandy also took her GRE test last week.  It’s a requirement for admission to grad school at Virginia Tech.  Even though she completed almost a year of grad school with all A’s and B’s, she still had to take this exam, which is intended to show academic readiness for grad school.  Crazy, I know, but it is a requirement.  Don’t know how she did, but she put a lot into it and it took a lot out of her!  The application deadline for admission with assistantship is January 15; that’s what she’s shooting for.  She is applying for the graduate program in Sociology.

Brandy goes back to Philadelphia this week for another booster treatment.  We’ll get to visit with Elizabeth and Lynn, and of course the Abruzzos.  But we get another treat – our trip overlaps with Kyle and his parents (from Oklahoma), who we first met in Germany.  Kyle will just be finishing the spinal infusion that Brandy went through in June.  We overlapped in Germany, but Brandy and Elizabeth were recuperating after the coma, and Kyle was just getting ready for it (his second coma treatment).  The girls and Kyle spent hours talking and really hit it off.  We hope Kyle is doing well; can’t wait to see him!

More (probably) after the boosters later this week.  Then we have to get through Thanksgiving and her birthday . . .

Gordy & Lisa

Aunt Brandy holds Reagan during her first Halloween (2009).

 

It has been a while . . .

Yeah, I know . . . we’re not too good at keeping up the blog.  But consider that no news is good news.

Even worse – Brandy’s (and Elizabeth’s) 1-year anniversary from their coma treatment was last week, and I didn’t even post anything!  Shame on me!  (In my defense, I’ve been travelling for work the past five weeks, and have two more weeks of travel to go!)  A year – woo-hoo!  And still RSD-pain free!  That is so wonderful!  When we think about how she was just over a year ago and how she is now – what a difference!

Speaking of travel, this week I’m in Salt Lake City, and Brandy and Lisa came with me.  We flew out here this morning (left the house at 3:45am for a 6:00 flight).  We’re tired, to say the least!  But Brandy did fine going through security and getting on the planes.  The first plane was a small jet, and she had to walk down steps from the terminal and up steps to get on the plane, then walk down the aisle to her seat.  She did great!  In Atlanta, and on arrival in Salt Lake City, she only had to walk a few steps between her wheelchair (at the plane door) and her seat.

At the hotel, she got on the treadmill for a few minutes walking slowly, like she does at PT.  Then she did some weights to help strengthen her arms.  Earlier,  Lisa and I pushed Brandy around The Gateway (outdoor mall near the hotel).  It was very bright and sunny, but only in the 50s with a cold breeze blowing.  Chilly, I’d call it.

So, back to Brandy and how she’s doing.  Her back still hurts, but she’s tolerating it (with the help of occasional pain pills).  Her foot is doing great.  As I mentioned, she’s using the treadmill at PT, but with regular shoes!  She still has a little bit of limited motion when she tries to turn her right foot outward and upward, but her Physical Therapist thinks that this will go away over time as she continues to work on it.  Her foot and leg occasionally changes color and gets hot, but there isn’t any pain associated with it.  She gained a lot of weight (or at least got puffy) due to the steroids she was on, but she’s slowly losing that. 

Here’s a new thing I haven’t mentioned in a while (if at all) – when her fingers get cold, they turn white and get numb.  This is called Reynaud’s Syndrome, and is a common secondary syndrome for people with RSD.  Plus, her Grandfather has it (which is why we recognized it when it first appeared for her in 2005).  Her doctor at the time confirmed the diagnosis; he said that she should wear gloves when it’s cold and try to keep her hands warm (same thing her Grandfather’s doctor told him).

Brandy and Elizabeth go for their boosters in about 3 weeks.  I’ll update after that, if not before.

Gordy

Brandy’s teeth – okay for now

Brandy went to the oral surgeon today. He said that she can wait on having her wisdom teeth removed. Two of the teeth have broken through her gums (hence the pain she had), and one is getting ready to. The fourth hasn’t completely cleared the bone yet, but it doesn’t appear impacted and he thinks it will but it may be a couple of years before it erupts through her gum.

The risk to leaving them in that their position makes them impossible to brush, and when they get cavities they are impossibly to fill; then they decay and get infected. It would likely be several years before that would happen. He said that younger patients heal faster; however, if we wait at least a couple of years, it would likely be an extraction rather than full oral surgery.

So, we can breathe easier, at least for a couple of years!

Otherwise, Brandy is doing fairly well.  Her back still hurts a lot, and she’s getting over a sinus infection. And, of course, there is the stress of having a house full of people (and animals).  But, compared to how she was just a year ago, she is doing wonderfully!

And yes, it’s been a year – one year ago we were in Germany . . . she was getting ready for her big sleep!

Gordy

Boosters, Days 2 and 3

Sorry we didn’t do a post yesterday.  The internet at the hotel hasn’t been very friendly this time; plus, we lost track of time.  There wasn’t much to report anyway — Brandy did fine with the Day 2 booster, we didn’t see Dr. Schwartzman, and her back started hurting in the evening (although not as much as the evening after the first booster).  There, you are now caught up . . . so let’s go on with Day 3.

Brandy did not sleep last night, and she was still awake when I went to wake her up.  Her back bothered her all night.  As usual, she did fine with her booster.  We got to talk with Dr. Schwartzman today and he is very happy with the progress that Brandy has made.  He is worried about the removal of her wisdom teeth.  He said that it is very risky because there are so many nerves connected to the teeth.  He highly recommends that she go to Mexico to have them removed, because they can do it as an inpatient with high doses of ketamine for several days.  The risk of RSD being triggered if she has them removed in Mexico is very light, I think he said there is a 99.9% chance of success.   We are not sure as to what the risk is if she has them removed in the U.S., but even if they use ketamine it would be as an outpatient – only for hours, not days.  Unfortunately, a lot will depend on the cost.

We were unable to go out to dinner with the Abruzzos to the Spaghetti Warehouse (our meeting place), because  Brandy was too sore and tired.  When we come back for another booster, we hope to be able to visit with them and do a lot of  catching up on life.  Even with this extra booster we will return in November at the same time as Elizabeth and Lynn.  (It just wasn’t the same here without them.)

We will be leaving tomorrow morning for home.  We are planning to stop at The Palms restaurant in Emmitsburg, Maryland for homemade Potato Soup that Brandy loves.  Then it is back in the car and the long drive home.  From Philadelphia it’s about 3 hours to Emmitsburg, and another 5 hours home from there.

Lisa

Booster, Day 1

Brandy did fine with her booster today. Her back felt much better, at least until this evening.  She had been sitting up for several hours, and I guess it just was too much for her back.  Otherwise she’s doing well.

We had a nice dinner with John and Rosemary. John is here for a booster as well. We met them at the first booster Brandy had after Germany. John is doing fairly well.

I’ll be speaking with Dr. Schwartzman tomorrow about Brandy’s back and wisdom teeth.

Lisa

Another Trip to Philadelphia

Brandy and Lisa are headed to Philadelphia (and I’m headed to DC for work). Brandy has a 3-day booster to try to alleviate the pain in her lower back. The steroids didn’t help much this time, so we’re even more worried that the RSD was re-triggered when the needle hit the nerve during her spinal infusion in June.

Brandy’s mouth has been bothering her, too, so she went to the dentist on Friday.  It turns out, as expected, that her wisdom teeth have erupted.  (I love that word! Why aren’t they called volcano teeth if they erupt?  But, I digress . . . .) Anyway, the dentist says that the wisdom teeth need to come out, but Dr. Schwartzman has said in the past, “No way – too risky for re-triggering the RSD.”   So, we’ll see what Dr. Schwartzman says this time . . . Brandy even has the dental x-rays with her.

Baby Reagan is doing fine . . . growing all the time.  She’s up to 9 lbs, 14 oz.  Mom and Dad are doing okay, too.  At least they’ll have the house to themselves until Thursday night or Friday!  That’s good for everybody.

One of us will let everybody know how the boosters are going and what the doctor says about Brandy’s volcano teeth, er, I mean wisdom teeth.

Gordy

Back Behind the Wheel

Brandy’s tailbone and hip still hurt (or hurt again) from where the spinal catheter hit the nerve.  She started another round of steriods this week; hopefully that will get rid of the pain.  Otherwise, little has changed:  she’s still working on walking with regular shoes, still not using her wheelchair much, etc.

One new thing is that Brandy got back behind the wheel this week.  She  stopped driving when she came home from Pittsburgh last May, so it’s been about 16 months since she last drove a car.  She and I went to the high school parking lot so she could get used to driving again, then went out on the road.  It’s like she never stopped driving.  Now she can get in the car and go whenever she wants (as long as she’s not on pain meds, of course).  Tuesday she’ll even go to PT by herself for the first time (Mom will be working at her aunt’s house).

Brandy goes back for the 3-day extra booster in two weeks.  Hopefully that will take care of the back pain once and for all! 

Nothing else to report for now . . .

Gordy

Back from Philadelphia, back to the grind

We drove to Philadelphia last week for Brandy’s boosters.  We took a different route, and it took about 6-1/2 hours.  The next morning, Brandy walked all the way from the hotel to the infusion suite!  That’s a long way, for someone who hasn’t walked much in eight years!  Elizabeth also walked it.  Both needed their wheelchairs after the infusion, but what a big step (no pun intended).  We met another coma patient – Judy – and her mom at Dr. Schwartzman’s.  We had corresponded with them a little bit before and during our Germany trip.

The boosters went well, but Dr. Schwartzman is concerned about Brandy’s continued intermittent pain in her back (tailbone).  Instead of three months, he wants her back in one month for an extended three-day booster treatment.  He is hopeful that the extra treatment will knock out any chance that the pain is a recurrance of RSD.  She goes back in mid- to late-September.

While in Philadelphia, Brandy and Lisa had a great time with Elizabeth and Lynn.  I joined them all on Friday, and we went to our regular meeting place (Spaghetti Warehouse) and had dinner with the Abruzzo family.  It’s the first time Brandy walked into the place (in the past she’s used her wheelchair).  As usual, we all could have stayed for hours talking about, well, everything.  We really enjoy getting together with all of them.

We left Philadelphia on Saturday morning, and went to my brother’s house in Alexandria.  We had a nice visit before heading to my other brother’s house in Burke for a birthday get-together for my dad.  It was really nice.  We stayed and talked for hours – even ignored the NASCAR race, just so we could talk.

Now it’s back to the grind after being away from work for three weeks.  It’s a difficult transition, but a good one because Lisa and I both like what we do.  Brandy is working toward applying to Virginia Tech’s graduate program in Sociology.  She is starting to think about the Graduate Readiness Exam – even though she has completed some grad school, Virginia Tech requires it.  She hates tests, but I’m sure she’ll do fine.

We’ll go back to updating every couple of weeks.

Gordy

The three RSD Ketamine Coma girls with their moms, August 21, 2009.

Back from vacation, off to Philadelphia

We made it home from the Outer Banks on Sunday in just over 6-1/2 hours.  It was good to get home even though vacation was so much fun.  Unfortunately, by the time we got home, Lisa had come down with a cold and Brandy’s back was hurting – either from all the walking over the previous 2 weeks or from the long car rides.

Baby Reagan was waiting for Gramma and Grandpa and Aunt Brandy when we arrived.  Lisa had to be careful around her (because of her cold).  What a cute baby!  Luckily, she doesn’t cry much (knock on wood!).

Today we leave for Philadelphia for Brandy’s ketamine booster treatment.  We’ll see Elizabeth and Lynn at the hotel tonight; Brandy is excited about seeing Beth.  Unfortunately, I won’t be able to stay with them – I have a meeting for work near Newark, NJ, so I’m going to stay only long enough to say “hi!” and then continue north.  My meeting ends at Noon on Friday (same as Brandy’s booster), so I’ll drive back and will spend Friday evening with everyone.

Saturday, we’re going to my brother’s house, and we’re having a birthday celebration for my Dad.  He turned 85 last weekend.  He’s an amazing guy – still plays 9 holes of golf a couple of times a week, and walks a couple of miles several mornings each week.  He’s in better shape than I am!  We’re looking forward to seeing everyone.  Well, almost everyone – my brother Doug and his family won’t be there, as they are at the beach.

More after the boosters.

Gordy

Brandy and Lisa look at the ocean from the gazebo on our last evening at the beach.

Brandy and Lisa ham it up for the camera, August 15, 2009.