August 16, 2001
ONE YEAR ANNIVERSARY REPORT
David has had his one year MRI and it shows NO new progression! He is pleased as we all are. His T-cell count is still doing some yo-yoing up and down. July shows it down from the May report. But Dr. Mason says not to worry, soon now it will start back up. When the count gets up to 200 his immune system will be starting back to normal. David has gained a bit of weight and is looking much healthier than he did one year ago.. He is back in physical therapy. Thanks for all of the support and prayers. Let us know if you are watching by adding a note to the bulletin board. We enjoy hearing from everyone and are glad to hear when this website helps someone who has MS. David has talked to folks all over the U.S. regarding the transplant!!
March 2001 MRI Update
Dr. Mason writes "I am pleased to report that your MRI of 3/19/01 has been compared with the previous value of 12/28/00 and the degree of MS is unchanged and stable, which is encouraging news indeed. Specifically, no new areas of involvement are noted." So needless to say we are very pleased to hear this. David's T-cell count has been going up 3 months in a row now, and it is hoped this will continue. David is coming up on the 1 year anniversary of his transplant. Thanks to everyone for all your support and prayers.. keep them coming.
March 2001... some of you have asked where the updates have gone, so here we are to catch you up to date. David saw Dr. Mason at Scripps in 3/20...had a new MRI, which we haven't received the results of yet. Dr. Mason is very happy with Dave's progress. David's immune system is still suppressed, which had us all concerned, but Dr. Mason reassured us and actually explained that it's a good thing... if his immune system had regained it's strength right away, the procedure would have been considered a failure because it would have meant the old sick immune system was so strong it had taken back over. So all's well. Any of you who saw Dave last June would be amazed at how great he looks... matter of fact, he's put on a couple pounds, gone up a couple pant sizes, and has a rosey complexion! Mom's home cooking has worked wonders...not to mention the loving care he's getting from being back home. Physical therapy has been ceased for the time being, but David continues to do his stretching exercises and tries to keep his body moving. Of course we'd all hoped David would be doing an Irish jig on his birthday (3/17) but even though he didn't, in David's own words "this procedure was a full on success... anything else is icing on the cake!" Still no pain has returned and that's is a huge measure of success... plus David says there are a lot of little things we wouldn't even notice, but to him life is much easier now... So as usual, we ask you to keep up the prayers and visits to the website. We'll keep you posted on the latest MRI results when they come in... Bless you from Dave and Family.
11/13 It took a while but the verdict is in on the latest MRI.... there has been no advancement of David's disease. That's good... no great news!! Other tests seem to fluctuate up and down, but the MRI is a solid picture that the disease is staying put for the time. Now let's hope to see it go in reverse!
Physical therapy is still moving along slowly as is progress on the vocational rehab. Seems like the government and other institutions similar to the government move in slow motion at times. The more you try to push the more they dig in their heals. But we are a group that doesn't take no for an answer so out of our way....
Thanks everyone.... keep watching. The H Family
11/5/00 This has been a movin' on month for David. This past week was his first week of having physical therapy only once a week. His physical therapist, Carolyn (whom we all love dearly) gave Dave a big hug a week ago and told him he was doing so well that he'd graduated from 3 days a week to just 1. He will be doing more work at home on his own (with the help of mom and dad of course) than he has been doing, but if progress continues this well, he won't be going to physical therapy as much. The great news is that David can walk across the room with his walker! I didn't say run, or even walk fast, but if you remember the David who was in the hospital at Scripps and if you could see him now, you would see he has climbed a mountain since then.
Since David is doing so well physically he's decided to add a new challenge both mentally and physically, and that is to try some skills training. He will begin this week learning a voice-activated program on a computer. This is about a 5 hour training to teach the computer David's voice and to teach David how to make it function for him. Rogue Community College is working on putting together a 2 week job shadow training period for David at a local concrete truck dispatching business. Hopefully he will be able to follow the dispatcher around for a couple weeks to see if he is still interested in this type of work. If he is, and if the company feels like David can do the work and they are willing to make the investment of time and energy into training David, a trainer from the company that distributes the voice-activated computer program will come to the job site and train David and the dispatcher on how to make this program work with their current computer program, and David will begin an actual skills training adventure. We aren't sure where this will all lead, but for the first time in many years David and everyone else can see a new future blossoming.
Still no word on the results of the MRI, but we'll post that when we hear. In the meantime, keep your good thoughts coming. Also... David will be in southern California for the holidays so all you old friends down there be sure to email him at horsefly42@msn.com and tell him how to find you. You'll be amazed at how great he looks (he even has a bit of a love handle around his middle!!!).. thanks to everyone. Love from Dave and family
10/11 Life is busy for Dave these days... seems like everyday is physical therapy or blood draw day or something fun. Dave continues to work diligently on his balance and muscle tone, and takes a few steps each day. He has been working in physical therapy this week on taking a few steps using a walker in hopes that within a couple weeks he might be doing some walking at home as well.... it's not easy, but he plugs away at each step. David had an MRI this week and we are waiting eagerly to see if there have been any changes; this may take a week, so think good thoughts. David still has days of great fatigue and weakness when he feels like progress must not be happening at all, then he is encouraged by the words of other recipients of this transplant and once again feels like he's on the right track.
On a fun note... David spent the night with a friend in Grants Pass and went on an early morning hunting trip. Let's just say shots were fired, animals fell, and he had a good enough time that he plans to repeat the trip this weekend!
David has become a regular with the MS society here in Medford, giving them all valuable info on his plight and I'm sure a few laughs... he makes everyone laugh...even as he is being carried down the stairs of a theater that doesn't accommodate handicappers, with his legs sticking out straight as a board..he laughs his head off because life can be such a gas sometimes!!
The latest endeavor may be a look at some vocational rehab... we'll save those notes for next time when we have moved along the process a little longer, so stay tuned in and keep your messages coming.. we're all listening to you too...
9/11/00 I know you've all been wondering what David's up to... sorry for the delay. Sometimes I think we're all waiting for some dramatic change to report to everyone and when that doesn't happen we keep waiting..... well David is doing great. He has physical therapy 2-3 times each week and the main focus right now is his balance. If you know David and have watched him in his struggle to keep afloat, you know that just sitting on the edge of his bed has been very difficult. David has been working with what he describes as a deflated basketball... sitting on it and learning to keep his balance, reach for something and then get back to a balanced state... it's very hard work. He has also been working hard on developing abdominal and back strength, you know that stuff you lose when you don't do your crunches! He's gained weight, we're seeing color in his skin again, and his hair is even about ready to cut!! David feels he's in a stage of really baby steps right now, not seeing tremendous change and he sometimes gets discouraged because on a day to day basis it's hard to see that change. BUT... he is doing so good and the change really is coming in his strength. Keep your messages coming, we all need those.
8/26 David just said good-bye to his sons Max and Travis today. They have spent a few days in Oregon with all of us having fun and getting a close up of what dad is trying to do. They saw him standing in the walking machine and seemed in awe to see their daddy in an upright position.
David was tested for a second time on 8/25 by his physical therapist, Carolyn. His previous physical strength testing had been done just 3 weeks ago... and guess what??? He had improved in all areas. Congratulations Davey!!! To Dave it feels like such baby steps, but to all who are watching him, we see leaps of progress from those days so recently when he was in the hospital. He is stronger now than when he went in to have his transplant, and gets stronger every day.
Thank you for your continued prayers and good wishes... all of those positive contributions are keeping David going, because it is such hard work. Bless you all...
8/16 Time is flying by so quickly.. it hardly seems a week since we checked in here. Yesterday at physical therapy David was strapped into a machine that actually lifted him up to his feet from a sitting position as if he were standing up all by himself. He saw in a mirror what it looks like to be in an upright position.. and it looks pretty darn good! With help he moved his legs, bent his knees, and took steps. It was soooo hard, but so very cool to see. We looked at each other and said "this is going to happen." You would all be so proud of how hard David is working, and believe me, some of the stuff he is doing is incredibly difficult... he's learning to walk all over again, but harder this time than the first. Max and Travis are here visiting with Dave, so we're having lots of fun too.
So far all the tests have been very encouraging and it feels like David is right where the doctors expect or even a little farther along, so all your good wishes and prayers are working... keep them up. If you want to call David, email me and we'll get the number to you. jbtalent@ccountry.net So long for now, and thanks to all of you for keeping in touch....
8/7 Because David had been feeling so tired last week, Dr. Mason ordered some tests...by the time the test results came back (all good by the way), David was already feeling much better. The tiredness could be just MS or related to the intense treatment he went through at Scripps...all we know is that he's feeling better right now. Physical therapy begins today, after a very thorough exam by the therapists. David should be getting stronger as I write!
The doctors following David are very pleased with his progress and are keeping a close eye on him...he's a wonder boy with his good attitude and willing spirit.
David hooked up with an old school pal here in Oregon and spent the day with him on Saturday...thanks Mark for showing Davey a good time, you're a nice friend.
We'll keep you posted as David's therapy progresses; he's working hard at his exercises on his own as well... a little bicycling, swimming, etc.
Beyond Scripps
7/31/00
Sorry it's been so long, but we will start to do periodic updates so all of David's followers can hear about his progress.
On 7/17 David was released by Dr. Mason to head to Oregon for some recovery with the help of his Oregon family. David's doctors at Scripps were very pleased with his progress and felt he did not need to be under their watchful eyes anymore. He will continue to have tests and reports sent to Dr. Mason and be followed regularly. On 7/24 David will see a neurologist in Oregon for follow-up tests requested by Scripps, and on 8/3 David will see a physical therapist so he can continue learning how to build those big muscles and become more mobile.
Now from Dave...... he says the pain that he suffered 24 hours a day for so long is completely gone..a very big deal. When David first came to Oregon a week or so ago he felt like the tiredness that he also suffers from was pretty much gone too, but since then has begun to feel that lack of energy again a little. Might be from the exercise he is doing that he has not been able to do for so long though. He is using a modified stationary bicycle; one that allows him to sit in his wheelchair and pedal without the strain of actually hoisting himself on to a bike. He is also doing some water therapy in a family pool (you should see the grin on his face when he's floating around!). At this writing, Dave feels like he has plateaued somewhat and is "waiting for the next stage of improvement." We all see such improvement in David... he has some calf muscles, his boney spine is no longer so visible, and he's getting a little color in his face. He's still pretty bald, but if you catch his head in just the right light, you'll see a bit of peach fuzz beginning to reappear... wonder what color it'll be. As always, Dave has a good attitude and would make you all proud. Keep watching this page for updates, and keep sending message. Thanks to all of you who are keeping an eye on David... he needs your prayers and positive thoughts as always. Davey's Family.
7/5/00 Since our last update - Sunday was a day of rest for all of us in David's home! Monday we went to Scripps Green - arrived at 1:30 for lab work and an appointment with Dr. Mason at 3 p.m. In between lab and Dr. appt. we went to the BMT unit to say hello to the Doctors, nurses and the friends we made during our stay in the hospital.
Dr. Mason is still pleased with Dave's progress. David told Dr. that the pain of MS is gone and Dr. said that he is recovering at the same pace as another transplant patient! Dr. follows all of his transplant patients 30 to 35 days after the transplant - this means to us that we will have to travel from Lakewood to Scripps two more times. Then if all is well David will be referred to a Neurologist in Medford.
Our plan is that David will go to Medford for some recup time.
Some of the things that the people around David have noticed since the transplant are: No more slurred speech. He tells us that his tongue does not feel BIG any more and we notice that David does not choke like he did before. Monday David took three steps with his walker without any other help. Today he stood in front of Dick (brother-in-law) and with his hands on Dick's shoulders took several steps. Tomorrow physical therapy begins again. Till next time!!
7/1/00 Time flies when your having fun!! Wed. was about the same for David - lots of rest and Anne came for PT. Unfortunately we had to say goodbye to her after just a couple of days of therapy because we had a Doctor's appointment on Thursday. No therapy on the same day as a Dr. appointment as it was more than David could handle. Getting in and out of the car that many times turns out to be about all the activity Dave needs. We were at the hospital at 8:30 a.m. on Thursday for lab work to be ready for a 10 a.m. Doctor's appointment. It seems Doctor Mason is pretty pleased with David's progress. He wants to see Dave again on Monday (7/3) and possibly one more time and then Dave can be followed by a neurologist closer to home.
From the Doctor appointment we went back to the apartment that we had called home since the beginning of this adventure. Our lease was up and we needed to pack to come back to Lakewood! How could we have gotten so entrenched in such a short period of time!
Friday we were ready to make the trip home and arrived about 2 p.m. David was tired from the ride and the excitement of coming home - but - he had such a pleasant surprise waiting for him here. Mary Beth, Dave's sister along with the help of the ever faithful friends and family and a couple of very special teen-agers had done a lot of things to fix up his apartment. The kind folks that manage his apartment complex did a paint job and new carpet was installed. How very nice - David says THANK YOU!
Today, Sat. Dave spent a little time outdoors visiting with his boys, Max and Travis. The rest of the day was spent resting and recupping. He has said many times in the last two days how very nice it is to be home!!
This evening David told us that the MS pain in his body was gone most of the time. Hopefully this is part of the stem-cell transplant at work and the MS pain will really be gone to stay. We want this to be true but are being cautious....... Stay tuned - Love to all, David and the caregivers!
6/27/00 Today is pretty quiet - Anne Yaple, physical therapist came to the apartment and helped Dave stand, again, he looks better every time he does. All of us learn things that will help to make him stronger and ways to help him that will not cause our muscles to scream at us the next day.
Each day he is feeling better. For this we are thankful... Till the next up-date...
...AND BEYOND...
