We are home!!! Lee's doctor could see that we both needed to go home. He told us that if things stayed the same or got better we could go home and come back in one week. We drove home and saw the beautiful, newly cleaned home! We are so glad to be here. The girls came home from Pennsylvania the next day, thanks to Robert and Chalece who picked them up at the airport and brought them home. We are so glad to be back with our girls. Mariah's singing is a joy, and Amelia is so much help, and a lot of fun to be with. It has been a long, quiet summer, and now the noise is !welcome
Lee had a blood test at our home clinic on Friday, his creatnine went down!! From 2.9 to 2.5, still abnormally high, but a move in the right direction. We now will only go to the other clinic once a week, unless things change for the worse. Lee is still having trouble eating, he is quite weak, and must wear his face mask for another 50 days whenever we go out in public.
It is still an up hill battle with lots of challenges, but somehow, being home more makes it easier to face!
Saturday, August 30, 2008
Sunday, August 24, 2008
A BIG THANK YOU!
Some of you know that we started remodeling our home in January, then had to have the bone marrow transplant before everything was completed. All the construction dust has been building up for months and every thing has been in disarray!
A wonderful crew of family and friends cleaned our home on Saturday!!! Lee cannot go home to a construction site because of the risk of fungal pneumonia. Thank you so much, Steve, Marta, Jared, Pam, Robert and Chalece. We owe you a big dinner, made by me in our new kitchen when we get back!!! I don't know what we would have done without your help!
THANK YOU!
A wonderful crew of family and friends cleaned our home on Saturday!!! Lee cannot go home to a construction site because of the risk of fungal pneumonia. Thank you so much, Steve, Marta, Jared, Pam, Robert and Chalece. We owe you a big dinner, made by me in our new kitchen when we get back!!! I don't know what we would have done without your help!
THANK YOU!
Day 52
Yes! It has been 52 days since transplant and we are still here at the clinic, away from home! We are really missing our girls, and our home, the walls seem to cave in on us at times. Patience has never been one of my strong points.
Whats keeping us here? Kidney failure. Lee's creatinine has been up as high as 3.1. Normal is around 1.1. When you hit 4 they think dialysis. We have been changing drug doses, discontinuing some etc. Finally Lee discontinued an antiviral drug on his own. Now the creatinine today is down to 2.9 As a physician Lee has tried so hard not to treat himself. But panic kind of set in. When no one really thought it was the antiviral drug but his numbers kept going and going up, he just tryed discontinuing it, then told the doctors(can't play with fire, transplant, nor kidney function is really his area of medicine!) The doctors said it was worth a try and today the number is lower!!! Answer to prayer!!!
Thank you, our children, for the extra prayers today!!! And to everyone for all the prayers!
Now keep praying it will continue on the downward trend!
Love the pictures of Jake's b-day party Mariah, Thanks!!!
Whats keeping us here? Kidney failure. Lee's creatinine has been up as high as 3.1. Normal is around 1.1. When you hit 4 they think dialysis. We have been changing drug doses, discontinuing some etc. Finally Lee discontinued an antiviral drug on his own. Now the creatinine today is down to 2.9 As a physician Lee has tried so hard not to treat himself. But panic kind of set in. When no one really thought it was the antiviral drug but his numbers kept going and going up, he just tryed discontinuing it, then told the doctors(can't play with fire, transplant, nor kidney function is really his area of medicine!) The doctors said it was worth a try and today the number is lower!!! Answer to prayer!!!
Thank you, our children, for the extra prayers today!!! And to everyone for all the prayers!
Now keep praying it will continue on the downward trend!
Love the pictures of Jake's b-day party Mariah, Thanks!!!
Saturday, August 23, 2008
Wednesday, August 20, 2008
Time Drags On
Wow! What a challenge this is! Lee's kidney function is causing us some difficulty. The doctors are changing medications, giving fluid, he is drinking 10 cups a day, and now we wait for more blood tests. Mentally we both went back home on Monday, but physically we are still here. You can imagine the conflict this is causing! The days have never been longer in our lives!!!
Anyway, nothing seems to be easy, stay tuned . . . . . . . . . . . .
Anyway, nothing seems to be easy, stay tuned . . . . . . . . . . . .
Monday, August 18, 2008
The American Idol 2008 Live Tour!
On Augest 13th David, Amelia, me, and my friend Berlynn went to the American Idol Live Tour! It was so much fun! I took a lot of pictures, especially of David Archuleta. It was very fun to actually see them in person, and my voice ended up hurting from all the screaming. Thanks Mom and Dad for the tickets!
By Mariah
Jacob's 5th Birthday Party!!
Here's an update from Pennsylvania:
On Augest 6th, Jacob had a Star Wars themed Birthday party and invited some friends. They all had a blast as they got cloaks (brown towels with hoods) and light sabers (pool noodles cut shorter on PVC pipes), learned jedi tricks (from Amelia), got read a pop up Star Wars book (from me) ate force fortified food, Yoda Soda (green soda/punch with dry ice), and Pizza the Hut, battled Darth Vader with Nerf Guns, and used their Light Sabers to get candy out of the Darth Vader Pinata. It was so fun!
By Mariah
P.S. sorry that there's no pictures, I would have put some, but for some odd reason, it wont let me.
On Augest 6th, Jacob had a Star Wars themed Birthday party and invited some friends. They all had a blast as they got cloaks (brown towels with hoods) and light sabers (pool noodles cut shorter on PVC pipes), learned jedi tricks (from Amelia), got read a pop up Star Wars book (from me) ate force fortified food, Yoda Soda (green soda/punch with dry ice), and Pizza the Hut, battled Darth Vader with Nerf Guns, and used their Light Sabers to get candy out of the Darth Vader Pinata. It was so fun!
By Mariah
P.S. sorry that there's no pictures, I would have put some, but for some odd reason, it wont let me.
Saturday, August 16, 2008
Staying Our Course
The days are just a little dull here. We are into the clinic about twice a week right now. There is a close watch on Lee's kidneys that are a little precarious at times which is not unusual for myeloma. It is interesting to watch Lee look at a plate of food, you would think I was asking him to run a marathon! Eating is very difficult. Each day we try new foods, try to see what will stay down, and what will taste good.
The chemo made a major assault on his GI tract, just one of the many challenges he has to face. I am so proud of him though, he trys everything I suggest, he goes for walks when he is tired, he eats when he doesn't feel like it, and I am constantly handing him something to drink to help him protect his kidneys. After loving him for over 30 years, I am still constantly amazed at his resolve and strength to endure.
The chemo made a major assault on his GI tract, just one of the many challenges he has to face. I am so proud of him though, he trys everything I suggest, he goes for walks when he is tired, he eats when he doesn't feel like it, and I am constantly handing him something to drink to help him protect his kidneys. After loving him for over 30 years, I am still constantly amazed at his resolve and strength to endure.
Wednesday, August 13, 2008
RESULTS!
The preliminary results are in!!! The tests show that Cynthia's stem cells have taken over 100 percent of the bone marrow"s work, making all of Lee's red and white blood cells. YEA! that is a very good thing! The tests also showed a trace of lambda protein which is the kind of cancer Lee has. However, they tell us it is early and the job for his new stem cells is to find the residual cancer and wipe it out.
To quote them, "From our point of view, you are sitting pretty!" That was like the angel choir singing yesterday after a sleepless night and tense morning. We would like the results to be perfect, no trace of lambda, but everyone was quite reassuring and it is good news.
The doctors want Lee to have just enough graft versus host disease to keep on knocking those cancer cells out, and he has a mild rash, and that is all they want. To much, like I said before, is life threatening.
The bulk of the tests, to be sure he goes into complete remission will come on the 100th day checkup, we are on day 40, so, as usual, we will take the good news we got, be happy, and live each day.
Speaking of living each day, we still can't go home for 2 more weeks, they tell us. Until Lee is eating, and walking better. This has taken alot out of him. They also tell us we cannot go home to our dusty construction ridden home. He would be at great risk of fungal pneumonia. So our son Robert will be madly cleaning the house.
This war on cancer is not over, we do feel we are ahead in the battle though, we can't thank you enough for all your prayers and well wishes and look forward to the day when we can look outward and serve you, our friends and family!
To quote them, "From our point of view, you are sitting pretty!" That was like the angel choir singing yesterday after a sleepless night and tense morning. We would like the results to be perfect, no trace of lambda, but everyone was quite reassuring and it is good news.
The doctors want Lee to have just enough graft versus host disease to keep on knocking those cancer cells out, and he has a mild rash, and that is all they want. To much, like I said before, is life threatening.
The bulk of the tests, to be sure he goes into complete remission will come on the 100th day checkup, we are on day 40, so, as usual, we will take the good news we got, be happy, and live each day.
Speaking of living each day, we still can't go home for 2 more weeks, they tell us. Until Lee is eating, and walking better. This has taken alot out of him. They also tell us we cannot go home to our dusty construction ridden home. He would be at great risk of fungal pneumonia. So our son Robert will be madly cleaning the house.
This war on cancer is not over, we do feel we are ahead in the battle though, we can't thank you enough for all your prayers and well wishes and look forward to the day when we can look outward and serve you, our friends and family!
Saturday, August 9, 2008
A NEW HOME
We had to make a change of address yesterday. My asthma was getting so bad, (I even had to make a clinic appointment for myself) that we knew the outside air was coming into our apartment. This is my worst season of the year for allergies. It seemed if we didn't move, Lee would be sharing a hospital room with me rather than me in his hospital room!
We moved into a much newer/ probably cleaner apartment just 2 1/2 blocks from the hospital. It is very nice, but twice the price. We hope we won't have to be here very long and go home in the next 2 weeks or so..
Eating for Lee is improving, although he makes himself eat, he is still on mostly liquid diet. Alas,
we probably won't be eating at The Outback, any more this trip!
Worry is setting in just a little for both of us, they are now doing the testing to see how successful the Bone Marrow Transplant has been. These tests will give us a good indication if Lee can live cancer free, at least for awhile(we pray continually for that miracle!) We have an appointment with his hematologist at the clinic on Tuesday, we will find out the results then. Although we have learned to live one day at a time (usually) we are trying to be positive, but almost afraid for Tuesday to come.
If you have the time, and think about it, a few extra prayers would be appreciated right now!
We moved into a much newer/ probably cleaner apartment just 2 1/2 blocks from the hospital. It is very nice, but twice the price. We hope we won't have to be here very long and go home in the next 2 weeks or so..
Eating for Lee is improving, although he makes himself eat, he is still on mostly liquid diet. Alas,
we probably won't be eating at The Outback, any more this trip!
Worry is setting in just a little for both of us, they are now doing the testing to see how successful the Bone Marrow Transplant has been. These tests will give us a good indication if Lee can live cancer free, at least for awhile(we pray continually for that miracle!) We have an appointment with his hematologist at the clinic on Tuesday, we will find out the results then. Although we have learned to live one day at a time (usually) we are trying to be positive, but almost afraid for Tuesday to come.
If you have the time, and think about it, a few extra prayers would be appreciated right now!
Wednesday, August 6, 2008
GOOD NEWS!
The doctor was quite positive today, he told us that Lee is doing quite well, pneumonia has cleared up and he is a little better every day. He said that next week he will probably turn us over to the transplant team in the clinic, rather than continue as a hospital outpatient. They have also remarked that because we live near such a good medical center, we could go home a little early and be monitored by our hematologist.
Eating is still coming very slowly, I am trying to think of creative ways to encourage him to eat.
That is the hardest challenge right now! Our spirits are good, and a good sign of recovery, Lee went to his first public place since transplant, the grocery store! He walked with me, and later sat and waited while I checked out. This is progress.
My husband is such a gentleman, even though he is weak and tired, he insists on letting me walk through doorways first, and if he could, he would open all the doors for me, but I won't let him touch any public thing, (germs!) it is hard for him to let me take care of him, he so wants to take care of me!
Eating is still coming very slowly, I am trying to think of creative ways to encourage him to eat.
That is the hardest challenge right now! Our spirits are good, and a good sign of recovery, Lee went to his first public place since transplant, the grocery store! He walked with me, and later sat and waited while I checked out. This is progress.
My husband is such a gentleman, even though he is weak and tired, he insists on letting me walk through doorways first, and if he could, he would open all the doors for me, but I won't let him touch any public thing, (germs!) it is hard for him to let me take care of him, he so wants to take care of me!
Sunday, August 3, 2008
Our Children
Our eight wonderful children!!! Picture taken at our cottage at the family reunion in July.
Here they are, all of our wonderful children, including the cutest grandchildren in the world!We just wanted to brag, and our numbers are growing, Aubrey and David are expecting a daughter in November, and Janette and Brandon are expecting in February. This is what life is all about!!!
Saturday, August 2, 2008
We're Out, We're Out
That's right! We are back in the apartment now. We hope to keep it that way until we go home, home. (That's what I call the place we really live, which I miss so much!)
Still on medication for pneumonia, but things have improved and as long as Lee can eat and drink enough, we can stay out. I am motivated! I am always giving Lee a glass of juice or some drink, and I keep track, a minimum of 8 glasses and better if it is 10 per day.
We go to the hospital each day for a check up, and then we have free time, which consists of being in the apartment trying to get Lee to eat and drink. I am so looking forward to the Olympics, something to provide a diversion.
Speaking of a diversion, I am currently reading "The Host", by Stephanie, Meyer, a book about aliens being inserted in to human bodies and taking over earth, weird, but I love it. The first baby sweater is done and I am working on the 2ND. Also I have another blog, just for fun, but I do share recipes, ideas, and my favorite things (like Oprah and Martha Stewart, not) but you might like the recipes, I only share my very favorites. (I do have an Internet alias) http://www.momsradar.com/. There, how does that sound for diversions?!!!
Still on medication for pneumonia, but things have improved and as long as Lee can eat and drink enough, we can stay out. I am motivated! I am always giving Lee a glass of juice or some drink, and I keep track, a minimum of 8 glasses and better if it is 10 per day.
We go to the hospital each day for a check up, and then we have free time, which consists of being in the apartment trying to get Lee to eat and drink. I am so looking forward to the Olympics, something to provide a diversion.
Speaking of a diversion, I am currently reading "The Host", by Stephanie, Meyer, a book about aliens being inserted in to human bodies and taking over earth, weird, but I love it. The first baby sweater is done and I am working on the 2ND. Also I have another blog, just for fun, but I do share recipes, ideas, and my favorite things (like Oprah and Martha Stewart, not) but you might like the recipes, I only share my very favorites. (I do have an Internet alias) http://www.momsradar.com/. There, how does that sound for diversions?!!!
Subscribe to:
Posts (Atom)