The Castners 2007

The Castners 2007

Friday, November 13, 2009

Back home -- on the road to, well, something

Sorry to everyone that was anxiously waiting our updates when we returned home. It's funny to realize just how little time I have to myself. I've tried to blog a few times , I really have, but it seems like there is always something cropping up (like a preschooler that thinks he can help me type -- "no mommy, I really can"). It took of a couple of days to re-acclimate to our home time zone. My parents brought Liam back from Arizona and then spent a few days here before flying home. What a blessing to have so much family willing to help -- and I think it took them all to keep up with Liam.

Last year it took around 2 to 3 months before we noticed anything new or at least before Dave was ready to admit that something was happening. So, we fully anticipated have to do the same updates as last year, "no, nothing new, but it could take a while", every other day when someone asked. I always feel a little defensive when people ask these questions. I really want to tell them something spectacular, like "this morning he got out of bed and forgot to use his wheelchair. he was half-way to the bathroom before he realized it" or even more simply, "his butt started to itch . . . and he could feel it!" Unfortunately, it's usually just something small and I have to try to explain it in a big way. Then, there's always the disclaimer -- "even if something does come back, the muscles haven't been used in sooooo long . . . " You get the idea.

Well, this year I know most of you understand that there is some waiting time and I really haven't been asked about his progress much. We arrived home and like I said, took a few days to re-adjust. Then we had the Halloween festivities. We invited some of the neighbors and their kids over for pre-trick or treat pizza and then the Dad's (and Melissa) took the kids out. I have to say, I was a little disappointed that it was the Dad's turn to take the kids while the Mom's handed out candy. . . then I remembered the best part of staying home . . . hot cider with Amaretto! Aaaah, we should really do this more often. Liam had a lot of fun as a pirate -- "trick aarrgghh treat" has been heard over, and over, and over for the last couple of weeks.

Dave got back to Physical therapy the following week. His parents stopped by on their way south for the winter and accompanied him on his appointments. I almost felt like reminding them before they left, not to expect too much . . . you know how parents can be, over-reaching and all . . . I'm glad I didn't though. I have learned over the years that I don't look particularly good with "egg on my face", nor do I handle being wrong very well (Dave is vigorously shaking his head to the affirmative -- "stop, you'll hurt yourself"). His first appointment after the procedure and already he noticed that tasks & excercises that were difficult to perform before were suddenly simply -- easy even. He has continued with therapy, 3 - 1 hour sessions a week, and is continuing to improve. . .

I thought about asking "will the miracles never cease?", but I realized -- no, they won't -- we have been living by our family motto -- "Faith is not beleiving that God can, it is knowing that he will" -- for nearly 3 years and now we can serve as a visualization to that faith!

Thursday, October 22, 2009

Germany 2009 -- Day 6 -- October 22

Ahhhh . . . going home tomorrow. Yes, we enjoyed the visit to Germany, but there just isn’t anything like sleeping in your own bed and even the joy of being woken early in the morning by a talkative 3 year old is sounding delightful at this point. Dave did start having some slight headaches overnight last night and this morning. He pretty much just laid-low this morning, lounging and reading in bed until early evening. He did quite a bit of sleeping, which I think is probably the biggest aid in the healing process after his procedure. In classic David-style though, he continued to be upbeat and positive reminding me (and possibly to remind himself) that it was still leaps-and-bounds better than the pain he experienced last year.

By evening he was feeling better and we had a couple of places we still needed to visit, so we headed out. We did not get to do the exciting adventures that I alluded to last night, simply because we didn’t want to push Dave too hard. However, we still managed to squeeze in some blog-worth pictures. For instance, no trip to Germany would be complete without a little hat shopping.
We then decided to stop in to the Benkay Japanese Restaurant that is attached to our hotel. What an amazing experience. We could choose between a sushi bar or a Tepanyaki grill – we decided to go with the grill and were not disappointed. For anyone that doesn’t know, Tepanyaki is the “art” of cooking directly at your table. It is fascinating to watch.

The meal was served in 8 courses. We started with a vegetable type platter that was delicious, but the only thing I can tell you was on it was spinach, because I have no idea what the other 2 items were. Then we had an appetizer of sushi, followed by a grilled seafood plate, Then a sorbet and salad – which I need to pause here to show you the picture – look closely

I have now officially eaten fish eggs – I’m not sure that I’ll be “craving” them anytime soon, but not as bad as I had expected.

The next course was miso soup , then the main entrée which was steak and vegetables, and a dessert of ice cream wrapped in crepes and served flambe’.
Even more impressive than the food was this – my mom will be proud – I ate the whole thing with chopsticks! Dave cheated and used a fork – or occasionally his fingers – but I suppose he has a better excuse than most.
Anyway, we are full and tired, so we will be heading to bed and getting ready for an early flight tomorrow.

Wednesday, October 21, 2009

Germany -- day 5 – October 21

Well, we are finally back from the hospital. The driver picked us up around 10:30 this morning for our 11am appointment time. However, as is with most hospitals, they didn’t actually take us back until around 1:45pm. We were able to have a nice chat with a woman from Tennessee who was there to treat her macular degeneration, as well as a man from Italy with the same problem (actually, he mostly listened and nodded, I’m not sure how much English he understood) and a woman who’s sister has diabetes and was having stem cells injected into her pancreas. It was very interesting to hear the different stories about how people came to the center and what they expected from it.

The second phase, or I should say 3rd since the lab work to separate the stem cells from the marrow happened between Monday and today, is probably the most complicated and last year definitely the most painful for Dave. First, they have him curl up into a ball as tight as he can so that the lower-lumbar area of the back is curved. This opens up the spaces between the vertebrae as wide as possible. Then they insert a long, thin needle through the gap and into the sack around the spinal cord where the spinal fluid is at. This needle is again very much like the type you may have seen used for IVs, with the removable insert for after the needle is place. They then remove a small amount of spinal fluid, one drop at a time.

Once this step is done, they fill a syringe with the now concentrated stem cells – remember the apx 175 ml from Monday? It is now around 4ml. They used a bit of the removed spinal fluid to “swirl” around the container with the stem cells to make sure that 1. They have all of the stem cells in the syringe (or at least as many as possible) and 2. To make sure they have as close to if not exactly the same amount of fluid that they just removed. This second part helps to keep the disruption to the pressure inside the spinal column to a minimal. Finally, the mixture is VERY slowly pushed back into the spinal area and again yes, just a bandaide to cover the injection site. The hard part last year came about 30 minutes after the injection, when the headaches started to hit. Last year, Dave was in quite a bit of pain until the evening of the day following the injection and the ibuprofen that they had given him did not help much at all. This year we asked as soon as the procedure was done, if he could have the Ibuprofen to make sure that he was at least ahead of the pain enough to keep it under control. The second miracle of the day happened, it is now 4 hours post-injection and he has not experienced ANY pain. No, I did not forget how to count . . .

The first miracle of the day was just before the injection. We met with the doctor just before Dave hopped on to the table. Remember Monday, when I told you about how they were able to get the extra marrow this year compared to last . . .wait, let me back track a bit . . . sorry for the suspense. Usually when they do a stem cell injection, they are looking for 2 things. The first is the stem cell count. They aim for a count of about 2 million stem cells in the injection, average is around 4-5million. The second is the viability of the stem cells that are present. Last year Dave’s were around 98%, which is very good, which is why he did so well even though he had a lower count than desired. Ok, here is the miracle part. This year his cells were 94% viable, which is still really good, but the count was . . . ok, are you sitting down? . . . actually, maybe you should be standing up, sitting down is awfully cliché . . . I mean really, usually when people hear something exciting and they’re sitting down, they just jump up anyway, so why not just start there . . . which reminds about this time . . . just kidding . . . his count this year was 11280000 . . . don’t count out the missing commas, I’ll spell it out . . . that’s 11 MILLION, 280 thousand stem cells! Kind of worth the suspense, eh? Well, I enjoyed it anyway. I mean look at your face!

My creative writing teacher would be so proud. Anyway, we are back in the room. Dave is taking a nap and still no pain, which means we will actually have an extra day (tomorrow) to do some sight-seeing. We are trying to plan something exciting since we didn’t think we’d be able to do them this visit. I know, again with the suspense, but I’d hate to ruin the surprise. Besides, it gives you something to look forward to read tomorrow!

Thanks to all of you for reading our blog and keeping Dave in your thoughts and prayers. They are working!!!!

Tuesday, October 20, 2009

Germany – Day 4 – October 20

We made our way to the Old downtown area today. We started with a stroll down the beautiful Rhine River Promenade. It was fun to see all of the families out for a walk or bike ride. There were some exceptional photo opportunities, my favorite of which was a block of buildings just off the Rhine in what I believe they call patrician houses (don’t ask me what that means, I’ll have to look it up later when I have some time). Whatever they are called, they were beautiful. We also saw some sheep grazing on the banks, which was very odd to see in such a large city and a wonderful old sailboat on display just off of the main river.

We then made our way to “the longest bar counter in the world”, which is an entire street of restaurants that are all side by side. Unfortunately, this was also the street that seemed to see the most broken glass, so we only made it half-way before deciding to take a side street out before Dave popped a tire. From there we wandered back across the newer downtown area to some of the shops we had seen, but not able to shop at on Sunday. We finished our day by stopping into a Greek Restaurant just down the street from our hotel (I have almost burned out on Wurst & beer/wine). Then we headed back to the room for Baklava & tea before bed. I satisfyingly exhausting day. Tomorrow is the 2nd half of Dave’s procedure and the most painful. Last year he had excruciating headaches for the day of and the day following the re-injection, so it will be an early night and hopefully enough rest to get us through the next 2 days.

p.s. we had room service ordered up on Monday night – forgot to mention this – We decided that Dave’s was prettier, but mine was much more satisfiying (or at least more filling). I know that was the information you were all waiting for . . . ok, well maybe not, but it was still funny!

Monday, October 19, 2009

Germany 2009 -- Day 3 -- October 19th

Today was the first day of Dave's procedure. For those of you that didn't follow along last year, or maybe need a little refresher - this is the part of the procedure where they withdraw the bone marrow. I was able to bring in our camera this time and take some photos so that you can hopefully view and follow along with these steps of the procedure. This is probably by far the easiest part of the procedure, and yet the longest of actual "work" being done. First they took us into a "clean" room and we had to adorn hair coverings, masks and gowns to cover our clothing, as well as plastic covers for our shoes.

Dave was then asked to go to a private room where Dave transferred onto a small hospital bed. He faced away from the edge on his side, and curled his knees upt toward his stomach. Next, they gave Dave a small dose of a local anesthetic before attempting to withdraw the bone marrow. The tool used works very much like the needle used for inserting an IV, only heavier because it has to be inserted into the back of the pelvic bone. It was inserted into the skin of his lower back (just above the tush); the doctor turned it once or twice (I assume to “drill” into the bone) and then removed the inner needle to leave a hollow tube going into the center of the bone. After that it was a lot like having a large blood test done. He simply filled several tubes with the bone marrow by attaching them to the hollow tube until full and then removing the tube and adding another.

This year they were able to draw 25 vials. Last year they stopped at the minimal of 15, because they were not getting enough marrow to come out. This year they were able to pull the maximum which is 25 vials. It looks like a whole lot, because each vial is about the size around of a tube of lipstick and about 3 inches long. I think this years total was around 175ml of bone marrow. After that was done, the tool was removed and they place a piece of gauze for pressure and then a small bandage over the to stop any bleeding and set up our next appointment for Wednesday. Dave has had a little bit of a problem with increased spasticity, which is probably just the body's reaction to the discomfort from the extraction (for any of you that have ever had bone marrow drawn, you know that "discomfort" is an understatement). We are back in the room now and will be having some dinner, watching a pay-per-view movie in the room and having an early night. Tomorrow we head for Old downtown and also what I like to call "the affordable district" for some shopping.

Sunday, October 18, 2009

Germany 2009 -- Day 2 -- October 18th

Today was a nice leisurely day -- we caught up on some much needed sleep, had a late breakfast and headed for the Konigsalee (which I think translates to "shopping, shopping, shopping", or something similar). So . . . in case anyone else didn't know this . . . all of Dusseldorf pretty much closes down on Sunday. So, we did some "window shopping", which was really not as much fun as it might sound, because apparently when we asked the concierge "where would you suggest we go for shopping", she heard "where can we extremely wealthy Americans go to personally support and expand your local economy". Yikes! I didn't see anything there that was even remotely affordable (including a pair of rainbow colored socks for 25 euro). Then you do something crazy like I did and figure in the cost with American dollars (1.5 times the euro) -- Honestly! Who paysnearly $40 for a pair of socks!!!! It's a good thing the stores were closed. I was th--is close to buying those socks. . . . Ok, maybe it was more like th----------------------------------------------------is close.Dave has the first process of the procedure tomorrow around noon, so we may lookaround a bit after that and then we're going to try to hit the Old Downtown on Tuesday. Wish me luck, or maybe wealth. . . . Oh, yeah . . . . and maybe a bit for Dave too. He's actually quite calm this time around, after knowing what to expect, hopefully is goes just as well and simply as last time.

Saturday, October 17, 2009

Germany 2009 -- Day 1 -- October 17th

Well, we finally arrived in Dusseldorf on Saturday after a very "exciting" adventure flying standby once again. We started in Denver, where east coast weather & mechanical problems sent 3 flights back to the Denver airport and consequently placed those passengers on the standby list ahead of us. After 12 hours, 2 coffees, and 1 ice cream stop -- we were able to catch a flight to Atlanta. However, the flight for Dusseldorf that day departed at 4:30pm and we arrived at 10:30pm. So we grabbed a room at a hotel just down the road and tried to catch some sleep. Unfortunately, the weather had delayed many flights that day and the airport was still trying to catch-up until probably 2am. Our luck was much better the following day and we were able to catch the flight to Dusseldorf. We checked into our hotel at 7am local time and grabbed a quick bite of breakfast. The plan was to take a short nap and then go see some of the city sites . . . . 5 hours later . . . well, by now it was dinner time, so we went for a walk and found the main train station which had lots of food stands and bakeries inside to choose food from. I don't know if Dave & I mentioned it last year, but we absolutely LOVE German bakeries! So we ingested about as many carbs asa human can possibly stand in one meal and headed back to the room . . . Ok, so maybe we had a little room left, so we grabbed some beer on the way. When in Rome! (I mean Germany)