6/26/00 Bringing David home from the hospital presented us with a whole new set of challenges! He is doing very well and getting stronger every day. So we spent the weekend getting things back in order after having to spend endless hours in the hospital. For several nights one of us spent the nights in the hospital because the nurses did not have time to work with his legs as often as he needed them moved. When he wakes up in the night the spasticity in his legs is hard to deal with. It is very painful for him and that is when we do some phsyical therapy and get them to bend and relax.
Then on Monday morning we went to the hospital for lab work and a visit with the Doctor. The pneumonia is very nearly gone and everything else looks good. So we were on our way to have the heart catheter removed. David said it was no big deal and is really glad it is gone!
6/24/00 Well today was a good day - we brought David home from the hospital. Dr. Mason is pleased with his progress. Pneumonia is almost gone. After a home cooked meal we took him for a bit of a ride outside, fresh air seemed pretty good to him.
Dr. Mason told us today that they have done this procedure for four people in this study. They have also done it for 12 or 13 more people who are not in the study.
Tomorrow is a day off for us and then Monday we will be back at the hospital on an out patient basis. So till Monday...
6/23/00 OOPs - white count yesterday was 14.9 and I forgot to ask today. BUT today therapy was the big fun - David walked about 20 feet! What a struggle, it took a couple of rests in the wheel chair but he kept on trying. Each day his legs seem to hold him up a little better. The pneumonia is better and he used very little pain medication today. He looks and sounds sooo much better and is getting his appetite back slowly. Till tomorrow.
6/22/00 Today was a very busy day. David had an ultra sound - checking his circulation, a chest x-ray - checking the pneumonia. The pluerisy turned out to be pneumonia and is better today. Circulation is good. Then came therapy - David had to work very hard but he took 6 or 7 steps using the walker and a little support from the therapist - but standing pretty straight. Then a bit of rest and therapy again, no walking this time but some leg exercises. David was exhausted but pleased with his progress.
His white count is at 15.8 today.
6/21/00 As predicted when the neupogen injections stopped the white count could drop and it did. Today on day 11 the white count is 15.8 David felt considerably better today. The pleurisy pain is almost gone.
The past few days physical therapy has been about getting the legs to bend easily and then about getting in the wheel chair. Sunday and Monday David sat in a wheel chair with a tall back because he felt to weak to hold his head up without support. Tuesday he sat in his own chair but needed to be lifted from the bed to the chair. TODAY - He pulled himself up to a standing position on a walker and lifted his heel off the floor and with his left foot took about a one inch step two times. The right foot was not so cooperative. He sat in his own chair and went for quite a long ride around the hospital and outdoors. Perhaps it is hard to imagine getting excited about lifting your heel or a one inch step - but we are excited, thankful and cautiously optimistic. Tonight David feels like he ran a marathon! Most of the pain meds are gone. Things seem to be looking up..So for this evening - Goodnight, sweet dreams!
6/20/00 AND THE WHITE COUNT IS....16.5 today - such good news! The neupogen injections are over and hopefully a bit of bone pain will also be gone with them. Other than that David had yet another day of feeling poorly. The pleurisy is still hanging around, a little better, but still there. So we hope for a better day tomorrow... Till then, God Bless
6/19/00 Well - we have some very good news - yesterday 6/18/00 eight days after the transplant David's white count was .5 that is good. This morning on day nine his white count is up to 4.8 so that is very good. He did get a neupogen injection today and maybe tomorrow. When the neupogen injections stop we can expect the count to go down some before his body begins to make the white cells on his own.
He has a nasty case of what Dr. believes to be pleurisy. They did an Xray this afternoon and we did not have the results when I left the hospital this evening. This is causing him a lot of pain. The legs are about the same and he continues to have physical therapy twice a day.
David has been up in the wheel chair for at least an hour twice a day for the last two days. So all in all he is still feeling pretty punk. We are looking forward to better days ahead!
I missed this little update a couple of days - just to see if anyone was watching - and guess what - I got a reminder from Colorado and one from Oregon. Thanks kids for keeping this Granny on her toes... Love to all from all of us!
6/16/00 Sorry I missed last night - the computer and I were not seeing eye to eye!! But we have come to an understanding - this computer and I!! SO since I missed June 15 we missed saying Happy Birthday to Auntie Jo - so Happy Birthday Wonderful!! now on with the business of the day. David is just feeling reeeally lousy, his white count is still 0.0 and the meds are making him start sentences he doesn't finish and he keeps saying I'm sorry to be a pest! His legs are so painful and that is why he has so much pain medication. He continues to get neupogen injections to encourage those baby stem cells. One day soon those little guys will decide it is time to sprout their wings and grow - we are looking forward to that day. Love to all.
6/14/00 David is feeling rather poorly today- his white count is down to zero. This is what we have been waiting for, now we are waiting for those little stem cells to get a move on and begin to make David better. The pain is being controlled with medication that also tends to make him feel tired, groggy and weak. But he continues to remind us that this will only last for a little while and then things will get better. So let's all keep that in mind and - say a little prayer!!
6/13/00 David's white count continues to go down - it went down quite a lot from Monday to Tuesday so it is possible to believe by Wed. or Thursday he could reach the low point. The early part of the day he was in a lot of pain, during the afternoon the Doc and Nurse arrived at a method of controling the pain so that he was resting comfortably when we left this evening. Tomorrow he will begin some physical therapy. Till then...
6/12/00 Today was pretty much a repeat of yesterday except that today one of the nurses exercised Daves legs. This really helped the pain so they taught Joann and I how to do these simple movements and we did it often through out the day. So we shall see what tomorrow brings - Goodnight all!
6/11/00 We just came from the hospital and the nurse was getting David ready for the night. They will give him a good back rub and get those legs in a comfortable position and he will be set for a few hours. He is still having a considerable amount of pain but is more alert today. Today they started him on a whole new group of medications - things to prevent any infections while his immune system is down and the new cells are reving up and getting ready to do the voo-doo they do (to borrow a phrase from Dave himself). David and all of his family would like to say thanks to everyone that made last nights fundraiser a grand success. Thanks to all of the good folks that have worked so very hard to make all of this possible. God Bless each and every one of you! Goodnight.....
6/10/00 TODAY IS DAY ZERO!!!! David received his stem cells back at about 11:20 a.m. and unfortunately slept right through the whole thing. They gave him a bit of something so that he would be able to lay very still and it was night-night Dave! Now his immune system will continue to diminish for the next few days and then in 7 to 10 days the stem cells will begin to grow and flourish into a new immune system and hopefully - pretty much thumb their little noses at Multiple Sclerosis!!..
Doctor decided that rather than an overnight stay David should be officially admitted for a few days. Coming off the 4-amino is really hard on him, it has made his legs harder to deal with and he feels weak, which could be partly the absence of the 4-amino and partly side effects of all the other stuff he has been through this week. Being in the hospital they can give him something so that he can rest - he has not been able to sleep very well the last few nights. So being in the hospital will be a good thing.
There are some very special people taking care of David in that hospital. The Doctors and Nurses are very attentive and caring. And all of your prayers are keeping his guardian angel sitting on his shoulder paying very close attention - it would not be good for a guardian angel to blink with all of us watching!! So for today, say a little prayer for those baby stem cells that they get busy and GROW!!
6/9/00 Well, as I said last night, they are taking David off the 4-amino and want it gone before the stem cell reinfusion. But since they waited until three days before the stem cells are to be reinfused that is a pretty big drop for David and his body is not taking to the change very kindly!! So he is spending the night in the hospital where they can give him something so that he will get some rest. We were at the hospital by 6:45 this a.m. to be ready for the first radiation treatment of the day. Then home for a bit and back to the hospital at 1:30 for the last of the radiation. Now - all of the unpleasant stuff like chemo and shots and radiation are finished and tomorrow morning - Sat. June 10, 2000 David will get those cleansed stem cells back!!! This is what it has all been about - keep your eye on the prize David - because here comes the good part!! God willing - you will be better soon...
David's big sister BJ came from Oregon to spend the day with us and celebrate her birthday... So this evening we wish you a very happy birthday! Love to all, David, A.Jo and Betty
6/8/00 Yep! we arrived at the BMT unit at 6:45 a.m. to have labs checked and an hour of hydration before the first radiation treatment at 8 a.m. which took a very short time. We came home for lunch and were back at the hospital by 1:30 for the second radiation treatment. On the way back to the hospital for the second time today David (for some strange reason) looked inside the cap he was wearing and - low and behold - there he saw some hair - so he turned his hat around and around and we were sure he would have a bald ring around his head. But seriously it looks like he is indeed loosing his hair. Guess that means that the chemo is doing its work. Today has been kind of a rough day - Dr. is weaning him off the 4-aminiopyridine. This causes his legs to be very rigid and he just doesn't feel real good. But - 'no worries' says Dave. So until tomorrow Goodnight and God Bless.
6/7/00 Because David had the Melphalan Chemotherapy yesterday (Tuesday) his white blood counts may begin to go down. We will go to the hospital every day and blood is sent to the lab to determine what his needs are each day. Today he was slightly dehydrated, so far that is the only side effect David has felt. They gave him fluids and we discovered that we will be rising very early tomorrow as we have to be at the hospital by 6:45...for the first day of radiation! So for this evening we will say goodnight - but before we do - we would all like to wish Stella a very happy birthday!!!! Love to all, David, A. Jo. and Betty
6/6/00 As promised we were at the hospital by 8 a.m. Blood draws went to the lab to be sure David was okay for the chemo today. Those tests came back just fine but in the mean time we went for a chest ex-ray. This was a busy spot so this stop took about an hour - back up to the transplant unit for an ekg and then begin hydration which takes about two hours before the chemo began. The actual chemo only took about 1/2 hour. All of this was completed by 2:20 on time for us to get to radiology for the CAT scan. We arrived back at the apartment about 3:30. So far so good - David is feeling just fine. NO side effects from anything - so far. He feels very Blessed to have so many friends and family members praying for him. Thanks to each and every one!! Love to all of you from all of us!!
6/5/00 The weekend was restful so we are ready to be at the hospital bright and early tomorrow morning. We are scheduled to be there at 8 a.m. to begin the high dose chemo and have a CAT scan at 2:30. So until tomorrow - Love from David, A. Jo and Betty
6/2/00 Today while A. Jo and I worked on a jig saw puzzle in the waiting room David was in with Dr. Giap getting tattooed. Sorry no pretty girls nor any girl friends names - these tattoos will serve as targets for the radiation treatments David will have next week. This took about an hour and a half while David was laying on a hard gurney trying to lay very still. So this evening he is pretty tired and stiff. We have no appointments until Monday so we will relax this weekend and hope you do too...David says thank you to everyone for the encouraging cards and bulletin board notes. We look forward to mail call and check the web often for 'news from home'. God Bless til Monday, David, A. Jo and Betty
6/1/00 Sorry to be so late this evening! We had company - Karen And Chris - Dave's cousins came over and brought dessert which we all enjoyed... Well today was pretty quiet. Dave was scheduled for a cat scan but because of scheduling problems it was put off and will happen next week instead. We did go to the hospital for a cath check. More tomorrow, Our love, David, A.Jo and Betty
5/31/00 YES!!!They only needed 5 million stem cells - So of course Mr. H. gave them !!10 million!! all in one day. We were all pleased with that, this means the neupogen injections are over. They checked the catheter and we were on our way home. Bye till tomorrow
5/30/00 What a big day we have had! Big day in that it has been very exciting - we arrived at the hospital at 7:15 a.m. and went directly to the pheresis room. Rita drew the blood samples that would tell if David's white blood count was high enough. It needed to be l.5 and David was 102.5 which meant YES they would collect stem cells today! He was hooked up to this very interesting looking machine and the process began. David laid on the bed and watched the movie Tombstone while Rita preformed her magic. The process took four hours. David tolerated staying in one spot for four hours very well. The stems cells were sent to the lab to be sorted and counted. The T-cells will be depleted from the stem cells (T-cells are the bad guys). They need to collect 5 Million stem cells. Hopefully they got enough today. The lab results willnot be ready until 8:a.m. tomorrow. So until tomorrow Bless you all, David, Auntie Jo and Betty
5/29/00 Our last quiet day - tomorrow is a big day - stem cell collection begins at 7:15 a.m. If we are lucky they will be able to collect enough in one day, if not it could be a two or three day process. David is looking forward this step in the procedure. We have to be up early so we are going to hit the hay early. Today we went to the hospital for a cath check and neupogen injection and came home as David was tired and feeling weak, most likely a reaction from the neupogen or just plain MS and a little excited about tomorrow. We are all excited about tomorrow but our boy is watched over very carefully by the caring staff at the hospital. Till tomorrow - good night.
5/28/00 Well looks like we missed a day!!But we are still here and today we have been suffering from the heat. The weather turned on us and the little window air conditioner doesn't quite cut it. We go to the hospital each day about 1 o'clock, they change the dressing on the catheter and give David his injection of neupogen. Then the rest of our outing amounts to a stop at the grocery store for supplies and home again. Today a young lady from an Orange County newspaper came to chat with David. So it will be interesting to see what becomes of that. Yesterday (Sat.) we met the first patient to have the stem cell transplant at Scripps Green Hospital. She was nearly bed ridden and in a lot of pain. I wish you could see her now - she walks with a walker and feels she is improving each day. She is very enthusiastic about the procedure and so willing to tell us what to expect and how she coped. Thank you Deb - your an inspiration!!! One more day till pheresis! and David is still grinning - till tomorrow - Our love and thanks for all the prayers and support. David, A. Jo and Betty
5/26/00
Today has been fairly quiet. We had a relaxing morning and went to the hospital about 1:30. Cath check (it looks good) and neupogen injection. Rita explained how the stem cell collection will be done. She will be the one on duty Tuesday when David begins stem cell collection. All we have to do is say stem cell collection or Tuesday and David just grins from ear to ear. We are very excited. So far David has tolerated every step VERY well. No side effects from the neupogen. All is well here - till tomorrow - sweet dreams!!!
Catheter Surgery
5-25
well we missed adding a message yesterday because it turned out to be a very busy day. David had the catheter surgery and it went very well. He had his neuprogen shot and we were on our way home. About half way home Dave said Oh, OH! I looked over and we turned around and headed back to the hospital. He was bleeding and to make a long story short he spent the night in the hospital. They had a little trouble getting the bleeding stopped and finally about 10:oclock called a surgeon in and he put a couple of stiches in the spot that was bleeding and the excitment was over. They did keep him overnight to be certain everything was OK. Once again the nurses at Scripps Green came thru with flying colors. And the Doctors, too, of course!! Karen and Chris (David's cousins) spent the evening with us at the hospital and stayed until they were convinced all was well.
This morning David was released about 10:30 - got his neuprogen shot and we came home. This is the first afternoon we have had several hours in a row - we rested, did laundry and are actually cooking dinner at home. Our apartment is very nice so we are looking forward to a quiet evening at home. Until tomorrow - Good night!
Dr. Giap-instruction re: radiation
5/23/00 -
Today we met with Dr. Giap and learned about the radiation David will be treated with later in this process. Tomorrow he will have the heart Catheter placement. So no eating or drinking after midnight and the surgery will be at 1p.m. So Auntie Jo and I are planning on David being a little grumpy in the morning!! I would be! WE appreciate all of the greetings and prayers - Thanks to everyone. Keep on praying we can feel you out there. He is being a good sport!! Love you all - stay tuned!!
Hello from Dave
5/22
It's not as bad as I thought it would be... I feel great and everyone is being so amazingly nice to me. Learned how to take care of the heart catheter they're going to install on Wednesday. All my meds will be put in through the catheter and the stem cells will be removed through the catheter. Having a great time down here... being taken care of like a king. Thanks for the notes on the website... keep writing, I'm loving it. Keep praying too. Dave
Checking in
5/20
David is feeling good after his first treatment. He is receiving a type of chemotherapy medication to stimulate growth of stem cells, and all went well.
...AND BEYOND...
